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How To Write Chapter Three Of Your Research Project (Research Methodology)

Methodology In Research Paper

Chapter three of the research project or the research methodology is another significant part of the research project writing. In developing the chapter three of the research project, you state the purpose of research, research method you wish to adopt, the instruments to be used, where you will collect your data, types of data collection, and how you collected it.

This chapter explains the different methods to be used in the research project. Here you mention the procedures and strategies you will employ in the study such as research design, study design in research, research area (area of the study), the population of the study, etc.

You also tell the reader your research design methods, why you chose a particular method, method of analysis, how you planned to analyze your data. Your methodology should be written in a simple language such that other researchers can follow the method and arrive at the same conclusion or findings.

You can choose a survey design when you want to survey a particular location or behavior by administering instruments such as structured questionnaires, interviews, or experimental; if you intend manipulating some variables.

The purpose of chapter three (research methodology) is to give an experienced investigator enough information to replicate the study. Some supervisors do not understand this and require students to write what is in effect, a textbook.

A research design is used to structure the research and to show how all of the major parts of the research project, including the sample, measures, and methods of assignment, work together to address the central research questions in the study. The chapter three should begin with a paragraph reiterating the purpose of research.

It is very important that before choosing design methods, try and ask yourself the following questions:

Will I generate enough information that will help me to solve the research problem by adopting this method?

Method vs Methodology

I think the most appropriate in methods versus methodology is to think in terms of their inter-connectedness and relationship between both. You should not beging thinking so much about research methods without thinking of developing a research methodology.

Metodologia or methodology is the consideration of your research objectives and the most effective method  and approach to meet those objectives. That is to say that methodology in research paper is the first step in planning a research project work. 

Design Methodology: Methodological Approach                

Example of methodology in research paper, you are attempting to identify the influence of personality on a road accident, you may wish to look at different personality types, you may also look at accident records from the FRSC, you may also wish to look at the personality of drivers that are accident victims, once you adopt this method, you are already doing a survey, and that becomes your  metodologia or methodology .

Your methodology should aim to provide you with the information to allow you to come to some conclusions about the personalities that are susceptible to a road accident or those personality types that are likely to have a road accident. The following subjects may or may not be in the order required by a particular institution of higher education, but all of the subjects constitute a defensible in metodologia or methodology chapter.

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Methodology

A  methodology  is the rationale for the research approach, and the lens through which the analysis occurs. Said another way, a methodology describes the “general research strategy that outlines the way in which research is to be undertaken” The methodology should impact which method(s) for a research endeavor are selected in order to generate the compelling data.

Example Of Methodology In Research Paper :

• Phenomenology: describes the “lived experience” of a particular phenomenon
• Ethnography: explores the social world or culture, shared beliefs and behaviors
• Participatory: views the participants as active researchers
• Ethno methodology: examines how people use dialogue and body language to construct a world view
• Grounding theory*: assumes a blank slate and uses an inductive approach to develop a new theory

A  method  is simply the tool used to answer your research questions — how, in short, you will go about collecting your data.

Methods Section Of Research Paper Example :

• Contextual inquiry
• Usability study
• Diary study

If you are choosing among these, you might say “what method should I use?” and settle on one or more methods to answer your research question.

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Research Design Definition: WRITING A RESEARCH DESIGN

A qualitative study does not have variables. A scientific study has variables, which are sometimes mentioned in Chapter 1 and defined in more depth in Chapter 3. Spell out the independent and dependent, variables. An unfortunate trend in some institutions is to repeat the research questions and/or hypotheses in both Chapter 1 and Chapter 3. Sometimes an operational statement of the research hypotheses in the null form is given to set the stage for later statistical inferences. In a quantitative study, state the level of significance that will be used to accept or reject the hypotheses.

Pilot Study

In a quantitative study, a survey instrument that the researcher designed needs a pilot study to validate the effectiveness of the instrument, and the value of the questions to elicit the right information to answer the primary research questions in. In a scientific study, a pilot study may precede the main observation to correct any problems with the instrumentation or other elements in the data collection technique. Describe the pilot study as it relates to the research design, development of the instrument, data collection procedures, or characteristics of the sample.

Instruments

In a research study, the instrument used to collect data may be created by the researcher or based on an existing instrument. If the instrument is the researcher created, the process used to select the questions should be described and justified. If an existing instrument is used, the background of the instrument is described including who originated it, and what measures were used to validate it.

If a Likert scale is used, the scale should be described. If the study involves interviews, an interview protocol should be developed that will result in a consistent process of data collection across all interviews. Two types of questions are found in an interview protocol: the primary research questions, which are not asked of the participants, and the interview questions that are based on the primary research questions and are asked of the participants.

In a qualitative study, this is the section where most of the appendices are itemized, starting with letters of permission to conduct the study and letters of invitation to participate with the attached consent forms. Sample: this has to do with the number of your participants or subjects as the case may be. Analysis (how are you planning to analyze the results?)

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EFFECTIVE GUIDE AND METHODOLOGY SAMPLES

This chapter deals effectively with the research methods to be adopted in conducting the research, and it is organized under the following sub-headings:

• Research Design
• Area of Study

The population of the Study

• Sample and Sampling Techniques
• Instruments for Data Collection

The validity of the Instrument

Reliability of the Instrument

• Administration of the instruments
• Scoring the instruments

Method of Data Collection

Method of Data Analysis

Research Design:

This has to do with the structure of the research instrument to be used in collecting data. It could be in sections depending on different variables that form the construct for the entire topic of the research problems. A reliable instrument with a wrong research design will adversely affect the reliability and generalization of the research. The choice of design suitable for each research is determined by many factors among which are: kind of research, research hypothesis, the scope of the research, and the sensitive nature of the research.

Area of Study:

Research Area; this has to do with the geographical environment of the study area where the places are located, the historical background when necessary and commercial activities of that geographical area. For example, the area of the study is Ebonyi State University. At the creation of Ebonyi State in 1996, the Abakaliki campus of the then ESUT was upgraded to Ebonyi State University College by Edict no. 5 of Ebonyi State, 1998 still affiliated to ESUT with Prof. Fidelis Ogah, former ESUT Deputy Vice-Chancellor as the first Rector. In 1997, the Faculty of Applied and Natural Sciences with 8 departments was added to the fledging University, and later in 1998 when the ESUT Pre-Science Programme was relocated to Nsukka, the EBSUC Pre-Degree School commenced lectures in both Science and Arts in replacement of the former. This study focused on the students of the Business Education department in Ebonyi state university.

The population is regarded in research work as the type of people and the group of people under investigation. It has to be specific or specified. For example educational study teachers in Lagos state. Once the population is chosen, the next thing is to choose the samples from the population.

According to Uma (2007), the population is referred to as the totality of items or object which the researcher is interested in. It can also be the total number of people in an area of study. Hence, the population of this study comprised of all the students in the department of Business Education, Ebonyi State University which is made up of year one to four totaling 482. The actual number for the study was ascertained using Yaro-Yamane's formula which stated thus:

n   =        N

N is the Population

1 is constant

e is the error margin

Then, n   =         482

1+482(0.05)2

= 214.35 approximately 214

Sample and sampling technique:

It may not be possible to reach out to the number of people that form the entire population for the study to either interview, observe, or serve them with copies of the questionnaire. To be realistic, the sample should be up to 20% of the total population. Two sampling techniques are popular among all the sampling techniques. These are random and stratified random sampling techniques. (A). in Random Sampling, the writers select any specific number from a place like a school, village, etc. (B). In Stratified Random Sampling, one has to indicate a specific number from a stratum which could be a group of people according to age, qualification, etc. or different groups from different locations and different considerations attached.

Instruments for Data Collection:

This is a device or different devices used in collecting data. Example: interview, questionnaire, checklist, etc. instrument is prepared in sets or subsections, each set should be an entity thus asking questions about a particular variable to be tested after collecting data. The type of instrument used will determine the responses expected. All questions should be well set so as to determine the reliability of the instrument.

This has to do with different measures in order to determine the validity and reliability of the research instrument. For example, presenting the drafted questionnaire to the supervisor for scrutiny. Giving the questionnaire to the supervisor for useful comments and corrections would help to validate the instrument.

The test-retest reliability method is one of the simplest ways of testing the stability and reliability of an instrument over time. The test-retest approach was adopted by the researcher in establishing the reliability of the instrument. In doing this 25 copies of the questionnaire were administered on twenty-five selected respondents. After two weeks another 25 copies of the same questionnaire were re-administered on the same group. Their responses on the two occasions were correlated using Parsons Product Moment Correlation. A co-efficient of 0.81 was gotten and this was high enough to consider the instrument reliable.

Administration of the instruments:

Here, the writer states whether he or she administers the test personally or through an assistant. He also indicates the rate of return of the copies of the questionnaire administered.

Scoring the instruments:

Here items on the questionnaire or any other device used must be assigned numerical values. For example, 4 points to strongly agree, 3 points to agree, 2 points to disagree, and 1 point to strongly disagree.

Table of Analysis

The researcher collected data using the questionnaire. Copies of the questionnaire were administered by the researcher on the respondents. All the respondents were expected to give maximum co-operation, as the information on the questionnaire is all on things that revolve around their study. Hence, enough time was taken to explain how to tick or indicate their opinion on the items stated in the research questionnaire.

In this study, the mean was used to analyze the data collected. A four (4) point Likert scale was used to analyze each of the questionnaire items.

The weighing was as follows:

VGE—————- Very Great Extent (4 points)

GE—————– Great Extent (3 points)

LE—————– Little Extent (2 points)

VLE—————- Very Little Extent (1 point)

SA—————– Strongly Agree (4 points)

A——————- Agree (3 points)

D—————— Disagree (2 points)

SD—————- Strongly Disagree (1 point)

The mean of the scale will then be determined by summing up the points and dividing their number as follows with the formula:

Where; x= mean

f= frequency

X= Nominal value of the option

∑= summation

N= Total Number

Therefore, the mean of the scale is 2.5.

This means that any item statement with a mean of 2.50 and above is considered agreed by the respondents and any item statement below 2.5 is considered disagreed.

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How To Write The Methodology Chapter

The what, why & how explained simply (with examples).

By: Jenna Crossley (PhD) | Reviewed By: Dr. Eunice Rautenbach | September 2021 (Updated April 2023)

So, you’ve pinned down your research topic and undertaken a review of the literature – now it’s time to write up the methodology section of your dissertation, thesis or research paper . But what exactly is the methodology chapter all about – and how do you go about writing one? In this post, we’ll unpack the topic, step by step .

Overview: The Methodology Chapter

• The purpose  of the methodology chapter
• Why you need to craft this chapter (really) well
• How to write and structure the chapter
• Methodology chapter example
• Essential takeaways

What (exactly) is the methodology chapter?

The methodology chapter is where you outline the philosophical underpinnings of your research and outline the specific methodological choices you’ve made. The point of the methodology chapter is to tell the reader exactly how you designed your study and, just as importantly, why you did it this way.

Importantly, this chapter should comprehensively describe and justify all the methodological choices you made in your study. For example, the approach you took to your research (i.e., qualitative, quantitative or mixed), who  you collected data from (i.e., your sampling strategy), how you collected your data and, of course, how you analysed it. If that sounds a little intimidating, don’t worry – we’ll explain all these methodological choices in this post .

Why is the methodology chapter important?

The methodology chapter plays two important roles in your dissertation or thesis:

Firstly, it demonstrates your understanding of research theory, which is what earns you marks. A flawed research design or methodology would mean flawed results. So, this chapter is vital as it allows you to show the marker that you know what you’re doing and that your results are credible .

Secondly, the methodology chapter is what helps to make your study replicable. In other words, it allows other researchers to undertake your study using the same methodological approach, and compare their findings to yours. This is very important within academic research, as each study builds on previous studies.

The methodology chapter is also important in that it allows you to identify and discuss any methodological issues or problems you encountered (i.e., research limitations ), and to explain how you mitigated the impacts of these. Every research project has its limitations , so it’s important to acknowledge these openly and highlight your study’s value despite its limitations . Doing so demonstrates your understanding of research design, which will earn you marks. We’ll discuss limitations in a bit more detail later in this post, so stay tuned!

Need a helping hand?

How to write up the methodology chapter

First off, it’s worth noting that the exact structure and contents of the methodology chapter will vary depending on the field of research (e.g., humanities, chemistry or engineering) as well as the university . So, be sure to always check the guidelines provided by your institution for clarity and, if possible, review past dissertations from your university. Here we’re going to discuss a generic structure for a methodology chapter typically found in the sciences.

Before you start writing, it’s always a good idea to draw up a rough outline to guide your writing. Don’t just start writing without knowing what you’ll discuss where. If you do, you’ll likely end up with a disjointed, ill-flowing narrative . You’ll then waste a lot of time rewriting in an attempt to try to stitch all the pieces together. Do yourself a favour and start with the end in mind .

Section 1 – Introduction

As with all chapters in your dissertation or thesis, the methodology chapter should have a brief introduction. In this section, you should remind your readers what the focus of your study is, especially the research aims . As we’ve discussed many times on the blog, your methodology needs to align with your research aims, objectives and research questions. Therefore, it’s useful to frontload this component to remind the reader (and yourself!) what you’re trying to achieve.

In this section, you can also briefly mention how you’ll structure the chapter. This will help orient the reader and provide a bit of a roadmap so that they know what to expect. You don’t need a lot of detail here – just a brief outline will do.

Section 2 – The Methodology

The next section of your chapter is where you’ll present the actual methodology. In this section, you need to detail and justify the key methodological choices you’ve made in a logical, intuitive fashion. Importantly, this is the heart of your methodology chapter, so you need to get specific – don’t hold back on the details here. This is not one of those “less is more” situations.

Let’s take a look at the most common components you’ll likely need to cover. 

Methodological Choice #1 – Research Philosophy

Research philosophy refers to the underlying beliefs (i.e., the worldview) regarding how data about a phenomenon should be gathered , analysed and used . The research philosophy will serve as the core of your study and underpin all of the other research design choices, so it’s critically important that you understand which philosophy you’ll adopt and why you made that choice. If you’re not clear on this, take the time to get clarity before you make any further methodological choices.

While several research philosophies exist, two commonly adopted ones are positivism and interpretivism . These two sit roughly on opposite sides of the research philosophy spectrum.

Positivism states that the researcher can observe reality objectively and that there is only one reality, which exists independently of the observer. As a consequence, it is quite commonly the underlying research philosophy in quantitative studies and is oftentimes the assumed philosophy in the physical sciences.

Contrasted with this, interpretivism , which is often the underlying research philosophy in qualitative studies, assumes that the researcher performs a role in observing the world around them and that reality is unique to each observer . In other words, reality is observed subjectively .

These are just two philosophies (there are many more), but they demonstrate significantly different approaches to research and have a significant impact on all the methodological choices. Therefore, it’s vital that you clearly outline and justify your research philosophy at the beginning of your methodology chapter, as it sets the scene for everything that follows.

Methodological Choice #2 – Research Type

The next thing you would typically discuss in your methodology section is the research type. The starting point for this is to indicate whether the research you conducted is inductive or deductive .

Inductive research takes a bottom-up approach , where the researcher begins with specific observations or data and then draws general conclusions or theories from those observations. Therefore these studies tend to be exploratory in terms of approach.

Conversely , d eductive research takes a top-down approach , where the researcher starts with a theory or hypothesis and then tests it using specific observations or data. Therefore these studies tend to be confirmatory in approach.

Related to this, you’ll need to indicate whether your study adopts a qualitative, quantitative or mixed  approach. As we’ve mentioned, there’s a strong link between this choice and your research philosophy, so make sure that your choices are tightly aligned . When you write this section up, remember to clearly justify your choices, as they form the foundation of your study.

Methodological Choice #3 – Research Strategy

Next, you’ll need to discuss your research strategy (also referred to as a research design ). This methodological choice refers to the broader strategy in terms of how you’ll conduct your research, based on the aims of your study.

Several research strategies exist, including experimental , case studies , ethnography , grounded theory, action research , and phenomenology . Let’s take a look at two of these, experimental and ethnographic, to see how they contrast.

Experimental research makes use of the scientific method , where one group is the control group (in which no variables are manipulated ) and another is the experimental group (in which a specific variable is manipulated). This type of research is undertaken under strict conditions in a controlled, artificial environment (e.g., a laboratory). By having firm control over the environment, experimental research typically allows the researcher to establish causation between variables. Therefore, it can be a good choice if you have research aims that involve identifying causal relationships.

Ethnographic research , on the other hand, involves observing and capturing the experiences and perceptions of participants in their natural environment (for example, at home or in the office). In other words, in an uncontrolled environment.  Naturally, this means that this research strategy would be far less suitable if your research aims involve identifying causation, but it would be very valuable if you’re looking to explore and examine a group culture, for example.

As you can see, the right research strategy will depend largely on your research aims and research questions – in other words, what you’re trying to figure out. Therefore, as with every other methodological choice, it’s essential to justify why you chose the research strategy you did.

Methodological Choice #4 – Time Horizon

The next thing you’ll need to detail in your methodology chapter is the time horizon. There are two options here: cross-sectional and longitudinal . In other words, whether the data for your study were all collected at one point in time (cross-sectional) or at multiple points in time (longitudinal).

The choice you make here depends again on your research aims, objectives and research questions. If, for example, you aim to assess how a specific group of people’s perspectives regarding a topic change over time , you’d likely adopt a longitudinal time horizon.

Another important factor to consider is simply whether you have the time necessary to adopt a longitudinal approach (which could involve collecting data over multiple months or even years). Oftentimes, the time pressures of your degree program will force your hand into adopting a cross-sectional time horizon, so keep this in mind.

Methodological Choice #5 – Sampling Strategy

Next, you’ll need to discuss your sampling strategy . There are two main categories of sampling, probability and non-probability sampling.

Probability sampling involves a random (and therefore representative) selection of participants from a population, whereas non-probability sampling entails selecting participants in a non-random  (and therefore non-representative) manner. For example, selecting participants based on ease of access (this is called a convenience sample).

The right sampling approach depends largely on what you’re trying to achieve in your study. Specifically, whether you trying to develop findings that are generalisable to a population or not. Practicalities and resource constraints also play a large role here, as it can oftentimes be challenging to gain access to a truly random sample. In the video below, we explore some of the most common sampling strategies.

Methodological Choice #6 – Data Collection Method

Next up, you’ll need to explain how you’ll go about collecting the necessary data for your study. Your data collection method (or methods) will depend on the type of data that you plan to collect – in other words, qualitative or quantitative data.

Typically, quantitative research relies on surveys , data generated by lab equipment, analytics software or existing datasets. Qualitative research, on the other hand, often makes use of collection methods such as interviews , focus groups , participant observations, and ethnography.

So, as you can see, there is a tight link between this section and the design choices you outlined in earlier sections. Strong alignment between these sections, as well as your research aims and questions is therefore very important.

Methodological Choice #7 – Data Analysis Methods/Techniques

The final major methodological choice that you need to address is that of analysis techniques . In other words, how you’ll go about analysing your date once you’ve collected it. Here it’s important to be very specific about your analysis methods and/or techniques – don’t leave any room for interpretation. Also, as with all choices in this chapter, you need to justify each choice you make.

What exactly you discuss here will depend largely on the type of study you’re conducting (i.e., qualitative, quantitative, or mixed methods). For qualitative studies, common analysis methods include content analysis , thematic analysis and discourse analysis . In the video below, we explain each of these in plain language.

For quantitative studies, you’ll almost always make use of descriptive statistics , and in many cases, you’ll also use inferential statistical techniques (e.g., correlation and regression analysis). In the video below, we unpack some of the core concepts involved in descriptive and inferential statistics.

In this section of your methodology chapter, it’s also important to discuss how you prepared your data for analysis, and what software you used (if any). For example, quantitative data will often require some initial preparation such as removing duplicates or incomplete responses . Similarly, qualitative data will often require transcription and perhaps even translation. As always, remember to state both what you did and why you did it.

Section 3 – The Methodological Limitations

With the key methodological choices outlined and justified, the next step is to discuss the limitations of your design. No research methodology is perfect – there will always be trade-offs between the “ideal” methodology and what’s practical and viable, given your constraints. Therefore, this section of your methodology chapter is where you’ll discuss the trade-offs you had to make, and why these were justified given the context.

Methodological limitations can vary greatly from study to study, ranging from common issues such as time and budget constraints to issues of sample or selection bias . For example, you may find that you didn’t manage to draw in enough respondents to achieve the desired sample size (and therefore, statistically significant results), or your sample may be skewed heavily towards a certain demographic, thereby negatively impacting representativeness .

In this section, it’s important to be critical of the shortcomings of your study. There’s no use trying to hide them (your marker will be aware of them regardless). By being critical, you’ll demonstrate to your marker that you have a strong understanding of research theory, so don’t be shy here. At the same time, don’t beat your study to death . State the limitations, why these were justified, how you mitigated their impacts to the best degree possible, and how your study still provides value despite these limitations .

Section 4 – Concluding Summary

Finally, it’s time to wrap up the methodology chapter with a brief concluding summary. In this section, you’ll want to concisely summarise what you’ve presented in the chapter. Here, it can be a good idea to use a figure to summarise the key decisions, especially if your university recommends using a specific model (for example, Saunders’ Research Onion ).

Importantly, this section needs to be brief – a paragraph or two maximum (it’s a summary, after all). Also, make sure that when you write up your concluding summary, you include only what you’ve already discussed in your chapter; don’t add any new information.

Methodology Chapter Example

In the video below, we walk you through an example of a high-quality research methodology chapter from a dissertation. We also unpack our free methodology chapter template so that you can see how best to structure your chapter.

Wrapping Up

And there you have it – the methodology chapter in a nutshell. As we’ve mentioned, the exact contents and structure of this chapter can vary between universities , so be sure to check in with your institution before you start writing. If possible, try to find dissertations or theses from former students of your specific degree program – this will give you a strong indication of the expectations and norms when it comes to the methodology chapter (and all the other chapters!).

Also, remember the golden rule of the methodology chapter – justify every choice ! Make sure that you clearly explain the “why” for every “what”, and reference credible methodology textbooks or academic sources to back up your justifications.

If you need a helping hand with your research methodology (or any other component of your research), be sure to check out our private coaching service , where we hold your hand through every step of the research journey. Until next time, good luck!

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Chapter 3 The Research Process

In Chapter 1, we saw that scientific research is the process of acquiring scientific knowledge using the scientific method. But how is such research conducted? This chapter delves into the process of scientific research, and the assumptions and outcomes of the research process.

Paradigms of Social Research

Our design and conduct of research is shaped by our mental models or frames of references that we use to organize our reasoning and observations. These mental models or frames (belief systems) are called paradigms. The word “paradigm” was popularized by

Thomas Kuhn (1962) in his book The Structure of Scientific Revolutions, where he examined the history of the natural sciences to identify patterns of activities that shape the progress of science. Similar ideas are applicable to social sciences as well, where a social reality can be viewed by different people in different ways, which may constrain their thinking and reasoning about the observed phenomenon. For instance, conservatives and liberals tend to have very different perceptions of the role of government in people’s lives, and hence, have different opinions on how to solve social problems. Conservatives may believe that lowering taxes is the best way to stimulate a stagnant economy because it increases people’s disposable income and spending, which in turn expands business output and employment. In contrast, liberals may believe that governments should invest more directly in job creation programs such as public works and infrastructure projects, which will increase employment and people’s ability to consume and drive the economy. Likewise, Western societies place greater emphasis on individual rights, such as one’s right to privacy, right of free speech, and right to bear arms. In contrast, Asian societies tend to balance the rights of individuals against the rights of families, organizations, and the government, and therefore tend to be more communal and less individualistic in their policies. Such differences in perspective often lead Westerners to criticize Asian governments for being autocratic, while Asians criticize Western societies for being greedy, having high crime rates, and creating a “cult of the individual.” Our personal paradigms are like “colored glasses” that govern how we view the world and how we structure our thoughts about what we see in the world.

Paradigms are often hard to recognize, because they are implicit, assumed, and taken for granted. However, recognizing these paradigms is key to making sense of and reconciling differences in people’ perceptions of the same social phenomenon. For instance, why do liberals believe that the best way to improve secondary education is to hire more teachers, but conservatives believe that privatizing education (using such means as school vouchers) are more effective in achieving the same goal? Because conservatives place more faith in competitive markets (i.e., in free competition between schools competing for education dollars), while liberals believe more in labor (i.e., in having more teachers and schools). Likewise, in social science research, if one were to understand why a certain technology was successfully implemented in one organization but failed miserably in another, a researcher looking at the world through a “rational lens” will look for rational explanations of the problem such as inadequate technology or poor fit between technology and the task context where it is being utilized, while another research looking at the same problem through a “social lens” may seek out social deficiencies such as inadequate user training or lack of management support, while those seeing it through a “political lens” will look for instances of organizational politics that may subvert the technology implementation process. Hence, subconscious paradigms often constrain the concepts that researchers attempt to measure, their observations, and their subsequent interpretations of a phenomenon. However, given the complex nature of social phenomenon, it is possible that all of the above paradigms are partially correct, and that a fuller understanding of the problem may require an understanding and application of multiple paradigms.

Two popular paradigms today among social science researchers are positivism and post-positivism. Positivism , based on the works of French philosopher Auguste Comte (1798-1857), was the dominant scientific paradigm until the mid-20 th century. It holds that science or knowledge creation should be restricted to what can be observed and measured. Positivism tends to rely exclusively on theories that can be directly tested. Though positivism was originally an attempt to separate scientific inquiry from religion (where the precepts could not be objectively observed), positivism led to empiricism or a blind faith in observed data and a rejection of any attempt to extend or reason beyond observable facts. Since human thoughts and emotions could not be directly measured, there were not considered to be legitimate topics for scientific research. Frustrations with the strictly empirical nature of positivist philosophy led to the development of post-positivism (or postmodernism) during the mid-late 20 th century. Post-positivism argues that one can make reasonable inferences about a phenomenon by combining empirical observations with logical reasoning. Post-positivists view science as not certain but probabilistic (i.e., based on many contingencies), and often seek to explore these contingencies to understand social reality better. The post -positivist camp has further fragmented into subjectivists , who view the world as a subjective construction of our subjective minds rather than as an objective reality, and critical realists , who believe that there is an external reality that is independent of a person’s thinking but we can never know such reality with any degree of certainty.

Burrell and Morgan (1979), in their seminal book Sociological Paradigms and Organizational Analysis, suggested that the way social science researchers view and study social phenomena is shaped by two fundamental sets of philosophical assumptions: ontology and epistemology. Ontology refers to our assumptions about how we see the world, e.g., does the world consist mostly of social order or constant change. Epistemology refers to our assumptions about the best way to study the world, e.g., should we use an objective or subjective approach to study social reality. Using these two sets of assumptions, we can categorize social science research as belonging to one of four categories (see Figure 3.1).

If researchers view the world as consisting mostly of social order (ontology) and hence seek to study patterns of ordered events or behaviors, and believe that the best way to study such a world is using objective approach (epistemology) that is independent of the person conducting the observation or interpretation, such as by using standardized data collection tools like surveys, then they are adopting a paradigm of functionalism . However, if they believe that the best way to study social order is though the subjective interpretation of participants involved, such as by interviewing different participants and reconciling differences among their responses using their own subjective perspectives, then they are employing an interpretivism paradigm. If researchers believe that the world consists of radical change and seek to understand or enact change using an objectivist approach, then they are employing a radical structuralism paradigm. If they wish to understand social change using the subjective perspectives of the participants involved, then they are following a radical humanism paradigm.

Figure 3.1. Four paradigms of social science research (Source: Burrell and Morgan, 1979)

Figure 3.2. Functionalistic research process

The first phase of research is exploration . This phase includes exploring and selecting research questions for further investigation, examining the published literature in the area of inquiry to understand the current state of knowledge in that area, and identifying theories that may help answer the research questions of interest.

The first step in the exploration phase is identifying one or more research questions dealing with a specific behavior, event, or phenomena of interest. Research questions are specific questions about a behavior, event, or phenomena of interest that you wish to seek answers for in your research. Examples include what factors motivate consumers to purchase goods and services online without knowing the vendors of these goods or services, how can we make high school students more creative, and why do some people commit terrorist acts. Research questions can delve into issues of what, why, how, when, and so forth. More interesting research questions are those that appeal to a broader population (e.g., “how can firms innovate” is a more interesting research question than “how can Chinese firms innovate in the service-sector”), address real and complex problems (in contrast to hypothetical or “toy” problems), and where the answers are not obvious. Narrowly focused research questions (often with a binary yes/no answer) tend to be less useful and less interesting and less suited to capturing the subtle nuances of social phenomena. Uninteresting research questions generally lead to uninteresting and unpublishable research findings.

The next step is to conduct a literature review of the domain of interest. The purpose of a literature review is three-fold: (1) to survey the current state of knowledge in the area of inquiry, (2) to identify key authors, articles, theories, and findings in that area, and (3) to identify gaps in knowledge in that research area. Literature review is commonly done today using computerized keyword searches in online databases. Keywords can be combined using “and” and “or” operations to narrow down or expand the search results. Once a shortlist of relevant articles is generated from the keyword search, the researcher must then manually browse through each article, or at least its abstract section, to determine the suitability of that article for a detailed review. Literature reviews should be reasonably complete, and not restricted to a few journals, a few years, or a specific methodology. Reviewed articles may be summarized in the form of tables, and can be further structured using organizing frameworks such as a concept matrix. A well-conducted literature review should indicate whether the initial research questions have already been addressed in the literature (which would obviate the need to study them again), whether there are newer or more interesting research questions available, and whether the original research questions should be modified or changed in light of findings of the literature review. The review can also provide some intuitions or potential answers to the questions of interest and/or help identify theories that have previously been used to address similar questions.

Since functionalist (deductive) research involves theory-testing, the third step is to identify one or more theories can help address the desired research questions. While the literature review may uncover a wide range of concepts or constructs potentially related to the phenomenon of interest, a theory will help identify which of these constructs is logically relevant to the target phenomenon and how. Forgoing theories may result in measuring a wide range of less relevant, marginally relevant, or irrelevant constructs, while also minimizing the chances of obtaining results that are meaningful and not by pure chance. In functionalist research, theories can be used as the logical basis for postulating hypotheses for empirical testing. Obviously, not all theories are well-suited for studying all social phenomena. Theories must be carefully selected based on their fit with the target problem and the extent to which their assumptions are consistent with that of the target problem. We will examine theories and the process of theorizing in detail in the next chapter.

The next phase in the research process is research design . This process is concerned with creating a blueprint of the activities to take in order to satisfactorily answer the research questions identified in the exploration phase. This includes selecting a research method, operationalizing constructs of interest, and devising an appropriate sampling strategy.

Operationalization is the process of designing precise measures for abstract theoretical constructs. This is a major problem in social science research, given that many of the constructs, such as prejudice, alienation, and liberalism are hard to define, let alone measure accurately. Operationalization starts with specifying an “operational definition” (or “conceptualization”) of the constructs of interest. Next, the researcher can search the literature to see if there are existing prevalidated measures matching their operational definition that can be used directly or modified to measure their constructs of interest. If such measures are not available or if existing measures are poor or reflect a different conceptualization than that intended by the researcher, new instruments may have to be designed for measuring those constructs. This means specifying exactly how exactly the desired construct will be measured (e.g., how many items, what items, and so forth). This can easily be a long and laborious process, with multiple rounds of pretests and modifications before the newly designed instrument can be accepted as “scientifically valid.” We will discuss operationalization of constructs in a future chapter on measurement.

Simultaneously with operationalization, the researcher must also decide what research method they wish to employ for collecting data to address their research questions of interest. Such methods may include quantitative methods such as experiments or survey research or qualitative methods such as case research or action research, or possibly a combination of both. If an experiment is desired, then what is the experimental design? If survey, do you plan a mail survey, telephone survey, web survey, or a combination? For complex, uncertain, and multi-faceted social phenomena, multi-method approaches may be more suitable, which may help leverage the unique strengths of each research method and generate insights that may not be obtained using a single method.

Researchers must also carefully choose the target population from which they wish to collect data, and a sampling strategy to select a sample from that population. For instance, should they survey individuals or firms or workgroups within firms? What types of individuals or firms they wish to target? Sampling strategy is closely related to the unit of analysis in a research problem. While selecting a sample, reasonable care should be taken to avoid a biased sample (e.g., sample based on convenience) that may generate biased observations. Sampling is covered in depth in a later chapter.

At this stage, it is often a good idea to write a research proposal detailing all of the decisions made in the preceding stages of the research process and the rationale behind each decision. This multi-part proposal should address what research questions you wish to study and why, the prior state of knowledge in this area, theories you wish to employ along with hypotheses to be tested, how to measure constructs, what research method to be employed and why, and desired sampling strategy. Funding agencies typically require such a proposal in order to select the best proposals for funding. Even if funding is not sought for a research project, a proposal may serve as a useful vehicle for seeking feedback from other researchers and identifying potential problems with the research project (e.g., whether some important constructs were missing from the study) before starting data collection. This initial feedback is invaluable because it is often too late to correct critical problems after data is collected in a research study.

Having decided who to study (subjects), what to measure (concepts), and how to collect data (research method), the researcher is now ready to proceed to the research execution phase. This includes pilot testing the measurement instruments, data collection, and data analysis.

Pilot testing is an often overlooked but extremely important part of the research process. It helps detect potential problems in your research design and/or instrumentation (e.g., whether the questions asked is intelligible to the targeted sample), and to ensure that the measurement instruments used in the study are reliable and valid measures of the constructs of interest. The pilot sample is usually a small subset of the target population. After a successful pilot testing, the researcher may then proceed with data collection using the sampled population. The data collected may be quantitative or qualitative, depending on the research method employed.

Following data collection, the data is analyzed and interpreted for the purpose of drawing conclusions regarding the research questions of interest. Depending on the type of data collected (quantitative or qualitative), data analysis may be quantitative (e.g., employ statistical techniques such as regression or structural equation modeling) or qualitative (e.g., coding or content analysis).

The final phase of research involves preparing the final research report documenting the entire research process and its findings in the form of a research paper, dissertation, or monograph. This report should outline in detail all the choices made during the research process (e.g., theory used, constructs selected, measures used, research methods, sampling, etc.) and why, as well as the outcomes of each phase of the research process. The research process must be described in sufficient detail so as to allow other researchers to replicate your study, test the findings, or assess whether the inferences derived are scientifically acceptable. Of course, having a ready research proposal will greatly simplify and quicken the process of writing the finished report. Note that research is of no value unless the research process and outcomes are documented for future generations; such documentation is essential for the incremental progress of science.

Common Mistakes in Research

The research process is fraught with problems and pitfalls, and novice researchers often find, after investing substantial amounts of time and effort into a research project, that their research questions were not sufficiently answered, or that the findings were not interesting enough, or that the research was not of “acceptable” scientific quality. Such problems typically result in research papers being rejected by journals. Some of the more frequent mistakes are described below.

Insufficiently motivated research questions. Often times, we choose our “pet” problems that are interesting to us but not to the scientific community at large, i.e., it does not generate new knowledge or insight about the phenomenon being investigated. Because the research process involves a significant investment of time and effort on the researcher’s part, the researcher must be certain (and be able to convince others) that the research questions they seek to answer in fact deal with real problems (and not hypothetical problems) that affect a substantial portion of a population and has not been adequately addressed in prior research.

Pursuing research fads. Another common mistake is pursuing “popular” topics with limited shelf life. A typical example is studying technologies or practices that are popular today. Because research takes several years to complete and publish, it is possible that popular interest in these fads may die down by the time the research is completed and submitted for publication. A better strategy may be to study “timeless” topics that have always persisted through the years.

Unresearchable problems. Some research problems may not be answered adequately based on observed evidence alone, or using currently accepted methods and procedures. Such problems are best avoided. However, some unresearchable, ambiguously defined problems may be modified or fine tuned into well-defined and useful researchable problems.

Favored research methods. Many researchers have a tendency to recast a research problem so that it is amenable to their favorite research method (e.g., survey research). This is an unfortunate trend. Research methods should be chosen to best fit a research problem, and not the other way around.

Blind data mining. Some researchers have the tendency to collect data first (using instruments that are already available), and then figure out what to do with it. Note that data collection is only one step in a long and elaborate process of planning, designing, and executing research. In fact, a series of other activities are needed in a research process prior to data collection. If researchers jump into data collection without such elaborate planning, the data collected will likely be irrelevant, imperfect, or useless, and their data collection efforts may be entirely wasted. An abundance of data cannot make up for deficits in research planning and design, and particularly, for the lack of interesting research questions.

• Social Science Research: Principles, Methods, and Practices. Authored by : Anol Bhattacherjee. Provided by : University of South Florida. Located at : http://scholarcommons.usf.edu/oa_textbooks/3/ . License : CC BY-NC-SA: Attribution-NonCommercial-ShareAlike

Serious Illness Care Research: Exploring Current Knowledge, Emerging Evidence, and Future Directions: Proceedings of a Workshop (2024)

Chapter: integrating lived experience into serious illness care research.

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12 SERIOUS ILLNESS CARE RESEARCH BOX 1 Continued • Research needs to consider multiple partner perspectives across the lifespan, across care settings, from the community to home to a more societal level. (Bakitas, Bartels, Grudzen, Kutner, Odom, Unroe, White) • Focus on research that will bring immediate impact while plan- ning for the long game; ensure sustained support for serious illness care science so that we can continue this work over the long term. (Kutner, Morrison) • Research teams need to be interdisciplinary. (Colborn, Kutner, Lane-Fall, Odom, White) • The goal of research is to make an impact. (Kutner) • Focus on the goal of research as improving quality of life. (Kutner, Morrison) • Researchers need to work with larger nonprofit organizations and coalitions that have the ability and skills to influence policy. (Meier) • Given much of serious illness care research takes place outside formal palliative care programs, research communities need to consider how to create bridges across specialties (e.g., oncol- ogy, primary care, neurology) and disciplines (e.g., medicine, nursing, chaplaincy, social work) to support these investigators. (Kluger) INTEGRATING LIVED EXPERIENCE INTO SERIOUS ILLNESS CARE RESEARCH Benzi Kluger, the Julius, Helen, and Robert Fine distinguished profes- sor of neurology and medicine and director of the Palliative Care Research Center at the University of Rochester Medical Center, opened the first session by recounting what he referred to as his “accidental journey” into palliative care. Once he began seeing patients after completing his training as a clinician and researcher, he began to hear heartbreaking stories from them, leaving him feeling helpless and hopeless. “I was not prepared for that in my training,” explained Kluger. “I think the rule in medicine is that you want to have a professional distance,” Kluger noted. He shared, however, that he “was lucky to have a mentor—workshop cochair Jean Kutner—who encouraged him to follow his heart (Kluger, 2018). Over the next 2 years, PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 12 5/10/24 1:38 PM 

PROCEEDINGS OF A WORKSHOP 13 • Recognize that it is possible to do rigorous quality improvement work to address current issues and generate evidence to inform the field at the same time; these two facets need to be linked more clearly. Researchers need to publish quality improve- ment results in the peer-reviewed literature and improve clinical practice based on emerging evidence. Opportunities exist with current data and real-world data applications for artificial intel- ligence, which can power natural experiments that can influence policy. (Kelley, Kluger, Kutner) • Consider data pooling to help nursing homes adopt the concept of a learning health care system. (Mor, Unroe) • The serious illness care field could learn much from business schools about implementation and scale. (Meier) • A journal of mixed methods would be helpful for the field. (Grudzen) • To increase the likelihood of a paper being accepted for pub- lication in the best journal possible, make sure to cite the NIH stage model, and also that the authors followed the appropriate framework for qualitative research (White) • In order to do rigorous science, ensure that researchers have methodologic expertise in the topic in addition to advanced degrees. (White) NOTE: This list is the rapporteurs’ synopsis of suggestions made by one or more individual speakers as identified. These statements have not been endorsed or verified by the National Academies of Sciences, Engineering, and Medicine. They are not intended to reflect a consensus among workshop participants. Kluger listened and communicated in a new way with patients, and that experience was almost like a third fellowship for him. “Patients and their families taught me what really matters and taught me a lot about how I could be a better doctor for them,” explained Kluger. He shared three key lessons from this experience: • Clinical researchers need encouragement, community, and practice to follow their heart. • Relationships with people living with serious illness in and out of the clinic are crucial to inform research priorities and questions and teach researchers how to do their jobs better. • Clinical innovation and quality improvement can drive high-quality research. PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 13 5/10/24 1:38 PM 

14 SERIOUS ILLNESS CARE RESEARCH Motivated by a vote of patients and families at the 2010 World Parkinson’s Congress, Kluger organized the first international working group on palliative care and Parkinson’s disease (Kluger et al., 2017). The working group’s first meeting, funded by a grant from the Parkinson’s Foundation, identified gaps in the serious illness care field and developed an ambitious road map that the field is still following today. Kluger credited the patients and families who participated in the meeting as critical to its success (Hall et al., 2017). Kluger specified that “it was not just respect for people living with serious illness, it was parity of esteem that made their input possible. They were very much the experts, and, in fact, were more of an expert in a lot of ways than I was,” he added. A Patient’s Perspective In 2013, Kirk Hall, an individual living with Parkinson’s disease, advo- cate, author, and speaker, was working on a book about his experience with Parkinson’s-related cognition issues (Hall, 2013). In the chapter on palliative care, he questioned whether it is possible for doctors to properly advocate for patients whom they do not know well. Hall urged clinicians to have a frank discussion with their patients to learn what is important to them and their family and explain care options. Kluger and Hall had ongoing discussions about integrating the patient experience into research. Their collaboration led to the development of “a model that included patient and care partner issues at all stages of the disease starting at diagnosis,” explained Hall. Hall suggested that the Patient-Centered Outcomes Research Institute (PCORI) fund research on palliative care for Parkinson’s disease. Hall and Kluger wrote a grant that funded a 3-year, multisite study demonstrat- ing the value of such care (Kluger et al., 2020). Since then, there have been two international conferences on palliative care and Parkinson’s dis- ease, a presentation Hall made at the 2016 World Parkinson’s Congress, and a follow-up study on training and implementing palliative care for Parkinson’s disease at the Parkinson’s Foundation Centers of Excellence. A new Community Outreach and Patient Empowerment program on Parkinson’s disease is under development to increase awareness and avail- ability of palliative care. Hall offered suggestions for moving the field forward: • support efforts to build awareness and facilitate expanding palliative care for Parkinson’s disease and neuropalliative care, • proactively identify individuals for advocacy training, PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 14 5/10/24 1:38 PM 

PROCEEDINGS OF A WORKSHOP 15 • engage current advocates to develop and implement training, and • brainstorm new ideas. Hall also noted the importance of removing barriers to including music and vocal therapy groups in palliative care programs. Kluger highlighted the lessons he took away from Hall’s presentation: • No one knows a serious illness better than the person living it. • People living with an illness know the real urgency and importance of improving care. • Patients improve research when treated as experts. Kluger pointed out that care partners are the least supported and most impor- tant members of a care team (Prizer et al., 2020). His team surveyed care partners about how much time they spend providing care, and one respondent said she was working up to 100 hours a week providing care for her loved one. “Having a care partner improves quality of life and improves outcomes for peo- ple with Parkinson’s and other serious illnesses,” observed Kluger. Given their key role, Kluger reiterated the importance of involving care partners in research. A Care Partner’s Perspective Malenna Sumrall, a patient care partner for her husband and caregiving advocate based at the University of Colorado Anschutz Medical Campus, recounted that when she met Kluger late in her husband’s Parkinson’s disease journey, he was the first doctor in 14 years who asked how she was doing. “It was toward the end of my husband’s life, and the palliative care was just so valuable to us in so many ways. It made me a passionate advocate for palliative care,” she shared. Having served on two PCORI- sponsored advisory councils and with a Ph.D. in educational research, Sumrall explained that she found it interesting to be involved in research as a care partner rather than as a researcher. She was impressed that the projects Kluger and his colleagues were conducting included both qualitative and quantitative components. “It made me realize that the researchers wanted the data to be as rich and as informative as possible,” she said. Sumrall was also impressed by how highly the researchers valued input from advisory council members. At one council meeting, an individual with Parkinson’s disease mentioned how he always tried to do his best physically at medical appointments; as Sumrall explained, “that led to the concept of ‘holding back,’” which then became an area of investigation in PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 15 5/10/24 1:38 PM 

16 SERIOUS ILLNESS CARE RESEARCH the research project. As part of that same project, the research team heard from patients and care partners how much they needed to talk to others who understood what they were going through. That led to creating a peer navigator program as part of Kluger’s clinic at the University of Colorado Anschutz Medical Center. Sumrall also started a Zoom support group for care partners. “I realized they do not have the time necessarily to go some- place for an hour or two,” explained Sumrall. “This gave them the flexibility to join in as much as they could.” Sumrall said that working with care partners has helped her contribute more than just her own experiences and perspective. “I have the voices of others when I participate,” she said. Her volunteering, she added, is her way of contributing to help others. “It is also the best way I can honor my husband. He was a social work professor whose passion in life was helping others, and that is what I hope I am doing now.” Kluger summarized lessons learned from Sumrall’s presentation: • Care partners need to be recognized and included as part of the care team in both clinical care and research. • Care partners have unique perspectives, expertise, and unbelievable amounts of lived experience. • Care partners need attention and support as individuals and second- order patients in addition to care partners. Kluger underscored that “PCORI does an amazing job in terms of including people with lived experience and other partners in every aspect of the research journey, from finding out what we should be researching, the agenda, and the evaluation process.” He credited PCORI’s rubric with helping him design an effective engagement plan and changing how many investigators approach research to think about things more pragmatically. Kluger said that he establishes patient and advisory councils for all his proj- ects and advises his mentees to do the same. Kluger credited PCORI, Hall, Sumrall, and the Parkinson’s Foundation for supporting a randomized comparative effectiveness trial showing that palliative care improved patient and family outcomes more than standard care (Kluger et al., 2020). The research grew directly from his clinic work, and he pointed out that it was successful because of the role the project’s partners played in developing the consent form, engaging participants, and choosing outcomes. They “helped us make better decisions, which helped it be a positive trial as opposed to what we see a lot of, which are negative trials of good palliative care interventions,” emphasized Kluger. PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 16 5/10/24 1:38 PM 

PROCEEDINGS OF A WORKSHOP 17 Building on the trial’s results, Kluger and his collaborators worked to integrate palliative care into the Parkinson Foundation’s Centers of Excel- lence network. Kluger noted that as a result of the key dissemination role played by the foundation, 33 of 34 academic sites he approached have joined the implementation project. The Parkinson’s Foundation Perspective Nicole Yarab, vice president for clinical affairs and information and resources at the Parkinson’s Foundation, has worked as a neurology nurse and cared for patients in a multidisciplinary amyotrophic lateral sclerosis clinic. Based on her clinical experience, she advocated for implementing palliative care across the foundation’s Centers of Excellence network. She explained that this work aligns with the foundation’s ethos of putting people with Parkinson’s disease and their care partners first through true patient engagement. Yarab pointed out that when involving patients and care partners in research, it is important to identify a project’s champions. The power of partnering with a nonprofit, according to Yarab, lies in its connections and resources. The foundation has the trust of the Parkinson’s community and many ways to reach people on a broad basis through its global care network. Yarab has used her position in the organization to champion the implementation effort and alert people about its importance in delivering quality care and improving people’s lives. In addition to identifying champions, another important aspect is regular meetings with its People with Parkinson’s and Care Partner Advisory Councils and clinician advisors. Collaboration, in Yarab’s view, is part of the “magic sauce.” “This is not something the foundation would have been able to do by itself,” she said, “and I do not think the community can do this work by itself, but if we put all our powers together, we are able to make a real impact.” Reflecting on Yarab’s presentation, Kluger underscored the impor- tance of working with people who are passionate and know how to get things done. He summarized the lessons learned from working with the Parkinson’s Foundation, noting that nonprofits • provide key resources to their communities, yet researchers often overlook them as partners; • have outstanding reach and can accelerate implementation and dissemination efforts; and • possess unique perspectives and expertise on systems, policy, communication, and community. PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 17 5/10/24 1:38 PM 

18 SERIOUS ILLNESS CARE RESEARCH Expanding Access to Palliative Care Kluger distinguished between implementing programs in academic set- tings and bringing palliative care to the broader population. To take on the challenge of broader dissemination, Kluger secured grants from the National Institutes of Nursing Research for a project to train community neurologists on the basics of palliative care, which they would otherwise not learn. It also relies on telemedicine to provide chaplains, social workers, pharmacists, and other resources to neurologists in rural areas (Kluger et.al, 2024). Not- ing high rates of burnout among neurologists, Kluger pointed out that the project is also trying to improve the lives of community health providers in addition to patients and care partners (Brashear and Vickrey, 2018). Kluger highlighted that a key lesson has been fully appreciating how much health care providers are interested in improving care. “They are very busy people and do not have time to be part of clinical trials, but they were honored to be part of this one because they wanted outcomes to be better, they wanted to learn palliative care, and they wanted to get social work, counseling, and other services for the people they serve,” said Kluger. One neurologist said that he valued being part of the study because he felt less alone in caring. “It is frustrating that we have to work so hard against the system to care for patients, and it can feel very isolating,” observed Kluger. Another lesson, noted Kluger, is that researchers can create alignment by co-learning and collaborating on identifying systems’ issues and solu- tions. He added that the research team is working with Hispanic commu- nities in Rochester, NY, to learn about their lived experiences so they can translate this model effectively for those communities. Kluger offered several key reflections and suggestions: • Research questions, priorities, and outcomes must come from thoughtful collaboration with people with lived experience, including patients, family carers, and other key partners. • Principles of parity and respect should be part of all aspects of collaborative research with lived experience experts. • For research to be applicable to underserved communities, additional efforts are needed to capture their lived experience. • Early career support and community is needed for researchers interested in serious illness care and palliative care. • Training programs are needed to increase the skills and confidence of persons with lived experience to approach and work with researchers. PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 18 5/10/24 1:38 PM 

PROCEEDINGS OF A WORKSHOP 19 • A complementary need exists for training programs to improve the skills and openness of researchers to foster optimal collaborations. • Persons with lived experience need to have ways to raise research questions and identify collaborators. • Dissemination plans must consider real-world impact and involve influential community partners, including nonprofits. Audience Q&A Kathleen Unroe, associate professor of medicine at the Indiana Uni- versity School of Medicine and research scientist at the Indiana University Center for Aging Research, asked panelists for ideas on how to include the perspective of and recruit residents in nursing homes and their care partners into research efforts. Sumrall noted that in all settings including nursing homes, it is important to include people who are willing to express their opinions, make them feel comfortable doing so, and have as much participant diversity as possible. Hall said that based on his experience, individuals who are engaged and have meaningful questions and input at support group meetings generally are the type of people researchers would want to include. He added that it is helpful to know the other activities potential advocates are involved in because that provides clues as to what they might bring to the table. Rebecca Aslakson, professor and chair of the department of anesthesi- ology at the University of Vermont Lerner College of Medicine, said that the hardest thing about palliative care research is not finishing the journey one takes with an individual because of their disease. Noting that she feels that research is a patient’s legacy, she asked panelists how to innovatively involve people who may be able to start but not finish it. Hall replied that this is difficult, particularly when people are not getting the help they need. Sumrall said that it is important to realize that involving people in research provides them with some meaning. “You are giving them the opportunity to make lives better for other people, and that is really powerful,” she said. Kathryn Pollak, professor of population health sciences at Duke University School of Medicine and member of the Duke Cancer Center, asked panelists for their thoughts on how to make research participants feel comfortable when they come from such different life experiences. Kluger added another layer to that question by noting that Parkinson’s disease affects people with different levels of cognitive ability to accommodate and people from diverse populations. For people with cognitive difficulties, PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 19 5/10/24 1:38 PM 

20 SERIOUS ILLNESS CARE RESEARCH he sends out a meeting agenda and questions in advance, so they have time to consider the questions. Given the importance of parity of esteem, it is key to elevate the ideas of every participant, find what was wise, courageous, and compassionate in what they said, and incorporate their ideas into research. “If you are able to do that consistently, you create a culture and a family where everybody feels safe and welcome,” said Kluger. Deborah Swiderski, attending physician and associate professor of medicine and family and social medicine at Montefiore Einstein, asked Kluger to elaborate on his ideas regarding training. Kluger replied that the Parkinson’s Advocates in Research program conducts training programs for patients and care partners who want to be involved in research. More remains to do, however, to engage people from underserved communities who are not at academic medical centers to enroll in the program. Kluger pointed to his work with Community Health Ministries to develop a train- the-trainer program. He emphasized that the goal is to get people to see themselves as experts and understand they have a great deal to contribute. Yarab added that the Parkinson’s Foundation works with community part- ners and its Centers of Excellence to engage with people who are not nor- mally involved in research. The key is to take advantage of the connections and relationships its partners have built and have experts and representatives of those communities help design something a program that is culturally relevant and meaningful. Charlotta Lindvall, assistant professor of medicine at Harvard Medical School and physician in the department of psychosocial oncology and pal- liative care at the Dana-Farber Cancer Institute, noted that the oncology community is developing centralized websites where researchers can reach out to diverse populations to enroll in clinical trials and wondered whether there were similar websites to enable patients and their care partners to engage in research. Kluger responded that one of the wonderful aspects of the Parkinson’s community is that care partners are recognized and embraced. He noted that The Michael J. Fox Trial Finder3 provides that capability, and the Parkinson’s Foundation was part of a study his group conducted that enrolled patients and care partners. Yarab added that the foundation offers other opportunities to reach care partners through its annual Care Partner Summit, helpline that provides connections to a vari- ety of services and programs, and weekly offering through the Parkinson’s Disease Health at Home program. 3 Additional information is available at https://www.michaeljfox.org/trial-finder (accessed March 16, 2024). PREPUBLICATION COPY—Uncorrected Proofs A02590--Serious Illness Care Research.indb 20 5/10/24 1:38 PM 

To explore the current and future state of serious illness care research, the National Academies Roundtable on Quality Care for People with Serious Illness hosted a public workshop in November 2023. Speakers identified research gaps and challenges and explored strategies and opportunities to further develop the evidence base to improve care for all those living with serious illness, their families, and care partners.

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Rethink Your Research Practices To Create Inclusive Experiences

Senem Guler Biyikli , Analyst

More than 1 billion people worldwide have disabilities and are underserved by today’s digital products. Global Accessibility Awareness Day  (GAAD), recognized yearly on May 16 , reminds us of this fact and aims to get everyone talking, thinking, and learning about digital access and inclusion.

By practicing inclusive design , businesses can increase revenue, decrease costs, improve resilience, and build trust with customers and employees. To practice inclusive design successfully, your research practices must also be inclusive. This is especially important for disability inclusion, because many companies are tempted to use quick-fix solutions to comply with digital accessibility requirements and skip research done with people with disabilities. According to a recent Forrester survey, only 29% of businesses in North America gather feedback from people with disabilities on their products.

On this Global Accessibility Awareness Day, take the opportunity to assess your research practices for inclusion . Here are three questions to start with.

1. Are You Including People With Disabilities In Your Research?

Conducting research with a diverse range of participants is essential for inclusive research practices, and this requires inclusive recruitment. You can reach diverse participants, including people with disabilities, by using inclusive screener questions . If you’re asking whether a participant has a disability, explain why you’re asking this question (e.g., “to better understand our customers”), and don’t forget to ask if they use any assistive technologies so that you can design your research study accordingly. For example, make sure the tools you use to run research, such as experience research platforms , are accessible. Some of our clients partner with organizations such as Fable and Knowbility for access to panels of people with disabilities for research.

Successful companies that are dedicated to inclusive design also monitor participant demographics to ensure that they are reaching a diverse group of participants. You can start doing this by auditing past studies to see who participated and who is missing in your research.

2. Are Your Empathy Practices Effective?

To build empathy with your customers , engage them throughout the design process — don’t just imagine what they might be going through. Empathy tools, such as personas and empathy maps, are great to understand customers, but without adequate research, these tools build on assumptions. This is why empathy workshops — where employees pretend to have a disability (e.g., wearing a blindfold) and use the company’s products as a way of understanding the experiences of customers with disabilities — don’t work. Participants walk away from those workshops with negative feelings , thinking it was hard, and don’t realize that it was just their own lack of experience in using assistive technologies. To understand experiences of customers with disabilities from their perspective, engage with them, observe their interactions with your product, and focus on solutions to improve their experiences.

3. Are You Incorporating Employee Feedback?

Employees know your company’s values, products, and customers, and their feedback is important to improve customer experience. Incorporating employee feedback to create accessible experiences not only improves your product but also shows that you recognize the value of employees’ thoughts. It also raises awareness by signaling that inclusion is a core value for your company. Seeking employee feedback, especially from those with disabilities, helps you identify accessibility issues early in the product development process. Employee resource groups are a great place to start. For example, Salesforce listens to and learn from its employees and employee resource groups to guide its inclusive product language.

Ready To Get Started? We Have Research To Help

For more research on this topic and examples of how to get started, check out the following Forrester reports:

• My colleague Gina Bhawalkar’s GAAD blog: Global Accessibility Awareness Day 2024: The Business Case For Accessibility Grows Stronger
• Build The Business Case For Inclusive Design
• Build A Toolkit To Assess Experiences For Inclusion
• Words Matter: Inclusive Experiences Start With Inclusive Language
• Five Best Practices To Design For Empathy In Digital Experiences

If you’re a Forrester client and would like to discuss this topic further, set up a conversation with me  here . You can also follow or connect with me on LinkedIn if you’d like to engage there.

• Accessible Design
• Age of the Customer
• customer-centric design

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Cultural Relativity and Acceptance of Embryonic Stem Cell Research

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There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities.

INTRODUCTION

Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve.

Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes. [1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research. [2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.” [3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops. [4]  Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture.

I.     Global Cultural Perspective of Embryonic Stem Cells

Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense, [5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research. [6] Consequently, global engagement in ESC research depends on social-cultural acceptability.

a.     US and Rights-Based Cultures

In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism, [7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.” [8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed. [9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field. [10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture. [11]

b.     Ubuntu and Collective Cultures

African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama , which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,” [12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth. [13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value. [14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society.

Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.” [15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail.

Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable. [16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus. [17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines. [18]

Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim. [19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research. [20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF.  Their use is conditioned on consent, and available only to married couples. [21] The community's receptiveness to stem cell research depends on including communitarian African ethics.

c.     Asia

Some Asian countries also have a collective model of ethics and decision making. [22] In China, the ethics model promotes a sincere respect for life or human dignity, [23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life. [25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research. [26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions. [27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency. [28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021. [29] However, issues still need to be addressed in implementing effective IRB review and approval procedures.

The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy, [30] research ethics should also adapt to ensure respect for the values of its represented peoples.

Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies. [31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells. [32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval, [33] and in another instance, the oocyte source was unclear and possibly violated ethical standards. [34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust.

d.     Middle East

Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells, [35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research. [36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors. [37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so. [38]

Jordan has a positive research ethics culture. [39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial. [40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation. [41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.” [42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes.

e.     Europe

In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected. [43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44]

For example, in Germany, Lebenzusammenhang , or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.” [45]  Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount. [46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007. [47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization. [48] Spain’s approach differs still, with a comprehensive regulatory framework. [49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility. [50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices. [51]

II.     Religious Perspectives on ESC

Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives.

The Qur'an states:

“And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.” [52]

Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception. [53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible. [54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research. [55]

In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided. [56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden. [57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all. [58] Acceptance varies on applied beliefs and interpretations.

Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero, [59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all. [60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime. [61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit. [62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets. [63]

Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life. [64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception: [65]

“If she is found pregnant, until the fortieth day it is mere fluid,” [66]

Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation. [67] Stem cell research is accepted due to application of these religious laws.

We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory , which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions. [68] We only wish to show that the interaction with morality varies between cultures and countries.

III.     A Flexible Ethical Approach

The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities.

While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe. [69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation.

For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent. [70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context, [71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders.  This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research.

Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values. [72]

An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions. [73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion.

IV.     Concerns

Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values. [74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions.

Other concerns include medical tourism, which may promote health inequities. [75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments. [76]

For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.” [77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices. [78]

The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.” [79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds. [80]

While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research.

For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society.

This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model.

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[5] Concerning the moral philosophies of stem cell research, our paper does not posit a personal moral stance nor delve into the “when” of human life begins. To read further about the philosophical debate, consider the following sources:

Sandel M. J. (2004). Embryo ethics--the moral logic of stem-cell research.  The New England journal of medicine ,  351 (3), 207–209. https://doi.org/10.1056/NEJMp048145 ; George, R. P., & Lee, P. (2020, September 26). Acorns and Embryos . The New Atlantis. https://www.thenewatlantis.com/publications/acorns-and-embryos ; Sagan, A., & Singer, P. (2007). The moral status of stem cells. Metaphilosophy , 38 (2/3), 264–284. http://www.jstor.org/stable/24439776 ; McHugh P. R. (2004). Zygote and "clonote"--the ethical use of embryonic stem cells.  The New England journal of medicine ,  351 (3), 209–211. https://doi.org/10.1056/NEJMp048147 ; Kurjak, A., & Tripalo, A. (2004). The facts and doubts about beginning of the human life and personality.  Bosnian journal of basic medical sciences ,  4 (1), 5–14. https://doi.org/10.17305/bjbms.2004.3453

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[7] Socially, at its core, the Western approach to ethics is widely principle-based, autonomy being one of the key factors to ensure a fundamental respect for persons within research. For information regarding autonomy in research, see: Department of Health, Education, and Welfare, & National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978). The Belmont Report. Ethical principles and guidelines for the protection of human subjects of research.; For a more in-depth review of autonomy within the US, see: Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics . Oxford University Press.

[8] Sherley v. Sebelius , 644 F.3d 388 (D.C. Cir. 2011), citing 45 C.F.R. 46.204(b) and [42 U.S.C. § 289g(b)]. https://www.cadc.uscourts.gov/internet/opinions.nsf/6c690438a9b43dd685257a64004ebf99/$file/11-5241-1391178.pdf

[9] Stem Cell Research Enhancement Act of 2005, H. R. 810, 109 th Cong. (2001). https://www.govtrack.us/congress/bills/109/hr810/text ; Bush, G. W. (2006, July 19). Message to the House of Representatives . National Archives and Records Administration. https://georgewbush-whitehouse.archives.gov/news/releases/2006/07/20060719-5.html

[10] National Archives and Records Administration. (2009, March 9). Executive order 13505 -- removing barriers to responsible scientific research involving human stem cells . National Archives and Records Administration. https://obamawhitehouse.archives.gov/the-press-office/removing-barriers-responsible-scientific-research-involving-human-stem-cells

[11] Hurlbut, W. B. (2006). Science, Religion, and the Politics of Stem Cells.  Social Research ,  73 (3), 819–834. http://www.jstor.org/stable/40971854

[12] Akpa-Inyang, Francis & Chima, Sylvester. (2021). South African traditional values and beliefs regarding informed consent and limitations of the principle of respect for autonomy in African communities: a cross-cultural qualitative study. BMC Medical Ethics . 22. 10.1186/s12910-021-00678-4.

[13] Source for further reading: Tangwa G. B. (2007). Moral status of embryonic stem cells: perspective of an African villager. Bioethics , 21(8), 449–457. https://doi.org/10.1111/j.1467-8519.2007.00582.x , see also Mnisi, F. M. (2020). An African analysis based on ethics of Ubuntu - are human embryonic stem cell patents morally justifiable? African Insight , 49 (4).

[14] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics , 22 (2), 112–122. https://doi.org/10.1111/dewb.12324

[15] Jecker, N. S., & Atuire, C. (2021). Bioethics in Africa: A contextually enlightened analysis of three cases. Developing World Bioethics, 22(2), 112–122. https://doi.org/10.1111/dewb.12324

[16] Jackson, C.S., Pepper, M.S. Opportunities and barriers to establishing a cell therapy programme in South Africa.  Stem Cell Res Ther   4 , 54 (2013). https://doi.org/10.1186/scrt204 ; Pew Research Center. (2014, May 1). Public health a major priority in African nations . Pew Research Center’s Global Attitudes Project. https://www.pewresearch.org/global/2014/05/01/public-health-a-major-priority-in-african-nations/

[17] Department of Health Republic of South Africa. (2021). Health Research Priorities (revised) for South Africa 2021-2024 . National Health Research Strategy. https://www.health.gov.za/wp-content/uploads/2022/05/National-Health-Research-Priorities-2021-2024.pdf

[18] Oosthuizen, H. (2013). Legal and Ethical Issues in Stem Cell Research in South Africa. In: Beran, R. (eds) Legal and Forensic Medicine. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32338-6_80 , see also: Gaobotse G (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[19] United States Bureau of Citizenship and Immigration Services. (1998). Tunisia: Information on the status of Christian conversions in Tunisia . UNHCR Web Archive. https://webarchive.archive.unhcr.org/20230522142618/https://www.refworld.org/docid/3df0be9a2.html

[20] Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[21] Kooli, C. Review of assisted reproduction techniques, laws, and regulations in Muslim countries.  Middle East Fertil Soc J   24 , 8 (2020). https://doi.org/10.1186/s43043-019-0011-0 ; Gaobotse, G. (2018) Stem Cell Research in Africa: Legislation and Challenges. J Regen Med 7:1. doi: 10.4172/2325-9620.1000142

[22] Pang M. C. (1999). Protective truthfulness: the Chinese way of safeguarding patients in informed treatment decisions. Journal of medical ethics , 25(3), 247–253. https://doi.org/10.1136/jme.25.3.247

[23] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[24] Wang, Y., Xue, Y., & Guo, H. D. (2022). Intervention effects of traditional Chinese medicine on stem cell therapy of myocardial infarction.  Frontiers in pharmacology ,  13 , 1013740. https://doi.org/10.3389/fphar.2022.1013740

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[28] Zhang, J. Y. (2017). Lost in translation? accountability and governance of Clinical Stem Cell Research in China. Regenerative Medicine , 12 (6), 647–656. https://doi.org/10.2217/rme-2017-0035

[29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[30] Chen, H., Wei, T., Wang, H.  et al.  Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017.  BMC Public Health   22 , 434 (2022). https://doi.org/10.1186/s12889-022-12839-0

[31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan.  Curr Stem Cell Rep   1 , 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6

[32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production . NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production

[33] Park, S. (2012). South Korea steps up stem-cell work.  Nature . https://doi.org/10.1038/nature.2012.10565

[34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned.  Accountability in research ,  13 (1), 101–109. https://doi.org/10.1080/08989620600634193 .

[35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

[36] Association for the Advancement of Blood and Biotherapies.  https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia

[37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia.  BMC medical ethics ,  21 (1), 35. https://doi.org/10.1186/s12910-020-00482-6

[38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics , 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics , 23 (3), 260–268. https://doi.org/10.1111/dewb.12355 ; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know . Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know

[39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France.  Biotechnology Law Report ,  32 (6), 349–356. https://doi.org/10.1089/blr.2013.9865

[45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf

[47] Regulation of Stem Cell Research in Germany . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany

[48] Regulation of Stem Cell Research in Finland . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland

[49] Regulation of Stem Cell Research in Spain . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain

[50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered:

Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110.

Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ...  Revista do Colegio Brasileiro de Cirurgioes ,  41 (5), 374–377. https://doi.org/10.1590/0100-69912014005013

Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India . Routledge.

For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe   

[51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights.  Cultura (Iasi, Romania) ,  14 (2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent?  Research Ethics ,  13 (1), 23-41.  https://doi.org/10.1177/1747016116650235

[52] The Qur'an  (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23

[53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life . Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/

[54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics , 31: 399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386

[55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association , 12 (4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf.

[56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52.  https://doi.org/10.5372/1905-7415.0801.260

[57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation.  Journal of Religion and Health ,  30 (1), 35–41. http://www.jstor.org/stable/27510629 ; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva . A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm

[59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. (( King James Bible . (1999). Oxford University Press. (original work published 1769))

Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…”

In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David.

Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…”

These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth.

[60] It should be noted that abortion is not supported as well.

[61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day . Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html

[62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells . Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html ; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology . Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf.

[63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed . Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/

[64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society , (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law).  Journal of assisted reproduction and genetics ,  25 (6), 271–276. https://doi.org/10.1007/s10815-008-9221-6

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Mifrah Hayath

SM Candidate Harvard Medical School, MS Biotechnology Johns Hopkins University

Olivia Bowers

MS Bioethics Columbia University (Disclosure: affiliated with Voices in Bioethics)

Article Details

This work is licensed under a Creative Commons Attribution 4.0 International License .

FAO’s Four Betters: a systems lens to accelerate the SDGs

With the SDGs intrinsic to FAO’s overall theory of change, the Organization is vitally invested in advancing them. Consequently, the Strategic Framework adopted in July 2021 seeks to support the 2030 Agenda through the transformation to more efficient, inclusive, resilient and sustainable agrifood systems. This approach has been synthesized as better production; better nutrition; a better environment; and a better life, leaving no one behind.

More than a concept, the four betters are an organizing principle for FAO’s work on SDG 1 (No Poverty), SDG 2 (Zero Hunger) and SDG 10 (Reduced Inequalities), as well as for furthering the broader 2030 Agenda. Actions to achieve SDG 2 and realize sustainable agrifood systems will accelerate progress across most other Goals and targets. Key SDGs and their indicators – including all indicators for which FAO is a custodian or contributing agency – act as instructions to sharpen the focus; track progress; and formulate aspirations for medium- or long-term outcome and impact.

The four betters do not posit individual or alternative pathways to the 2030 Agenda. Instead, they reflect and build on the interconnected economic, social and environmental dimensions of agrifood systems. These interlinkages tend to manifest themselves in three main areas: agricultural productivity, environmental impact and social sustainability (with the proviso that productivity is mainly linked to economic sustainability). FAO’s agrifood systems approach thus casts agriculture, beyond its production and macroeconomic functions, as the means to realize food security and resilient livelihoods, promote innovation, and catalyse investment and partnerships.

This publication aims to illustrate FAO’s work under the four betters to support the implementation of the Sustainable Development Goals.

Multiple fisheries projects received funding to advance research

Thanks to $1.3 million in Great Lakes Restoration Initiative funding, we at the U.S. Fish and Wildlife Service will move forward several fisheries projects, including work at several of our agency’s stations from both the western and eastern Great Lakes.

Three projects will be supported in 2024, which will aid in restoration of sustainable populations of coregonines in Lake Ontario to reestablish their historical roles as forage for predators.

Researching coregonines

A first project at the Alpena Fish and Wildlife Conservation Officein Michigan will support researching coregonine populations, including fish like cisco and bloaters. Research will include a focus on Lake Huron and will continue to collect baseline information on lake herring communities, including the assessment of the post-stocking survival, growth and maturity of these cultured cisco. This will allow staff to assess reproduction.

Studying lake herring

A second project, led by the Green Bay Fish and Wildlife Conservation Office, in Wisconsin, will study wild lake herring for Saginaw Bay Restoration. The conservation office will also evaluate a proof-of-concept process for collecting wild juvenile fish for development into future broodstock broodstock The reproductively mature adults in a population that breed (or spawn) and produce more individuals (offspring or progeny). Learn more about broodstock . Currently, staff face hazards when accessing offshore winter spawning locations for fish collections and other serious logistical challenges, including achieving high capture efficiencies and personnel safety. The work will test a fundamentally different approach of capturing juvenile fish to determine rates of survival during capture of the fish, subsequent isolation through the rearing process, and whether this new method is feasible.

Partnering to benefit regional fisheries

For a third project, Great Lakes Restoration Initiative funding will also be used by the Allegheny National Fish Hatchery, and the Northeast Fishery Center, both in Pennsylvania, in partnership with the U.S. Geological Survey Tunison Lab, in New York, the New York Department of Environmental Conservation and the Ontario Ministry of Natural Resources.

In addition to the projects described above, work will include developing a better understanding of how these fish play a role in the food web. Planned work will also improve health and quality of juvenile bloater, fish health monitoring, assessment and monitoring of wild populations and hatchery production, spawning habitat evaluations, population viability analysis, and development of technical capabilities. This also includes evaluation and analysis of using eDNA to monitor populations and help focus traditional fisheries survey efforts. Lastly, work will also include infrastructure enhancements to increase production of coregonines.

“The Great Lakes Restoration Initiative has been very instrumental in supplementing our ability to support reintroductions of native prey species to the Great Lakes. We could not do this amount of work without it,” Midwest Region Hatchery Program Supervisor Kurt Schilling said.

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