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An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop (2020)

Chapter: 4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research

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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

4

Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

Inequalities can be based on race, gender, national origin, language, sexual orientation, disability, veteran status, and any number of other characteristics, said Anita Allen of the University of Pennsylvania. In this session, panelists considered the impact of inequality on health, disease, and who participates in research. Dorothy Roberts, the George A. Weiss University Professor of Law and Sociology and the director of the Penn Program on Race, Science, and Society at the University of Pennsylvania, discussed the ethical and structural issues related to the relationship between race and racism. Vanessa Hiratsuka, a senior researcher at Southcentral Foundation, discussed bioethical issues that are unique to American Indian and Alaska Native tribes due to their status as both a racial group and a political entity. The session was moderated by Allen.

THINKING ETHICALLY AND STRUCTURALLY ABOUT RACE AND RACISM

One of the central bioethical questions is about the relationship between social inequalities and biology, Roberts said. The idea that social inequalities are caused by innate biological differences (e.g., race, gender) has long been used to justify the unethical and abusive treatment of groups of people. This argument was used to rationalize the enslavement of black people by white people, for example. The eugenics movement was also based on the false idea that heritable, innate traits were the root of social inequalities. “Inequalities of power based on race have been blamed on innate biological differences between races,” Roberts said, and for this session she focused her remarks on the idea that “race is a scientific invention.”

The Origins of Race

Roberts reminded participants that the major categories of race used today derive from the racial typology defined by anthropologist Johann Blumenbach in the late 1700s and that the work of historian Terence Keel suggests that the Enlightenment sciences adopted the idea that human beings are naturally divided into races from Christian theology. Furthermore, she said, the conduct of science has been influenced significantly since then by

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

the invention of racial categories. Even today, scientific studies involving human participants routinely categorize them into supposedly biological races, though researchers typically use social groupings. Roberts said that the impact of applying this concept of biological race to the fundamental design and conduct of science has not yet been fully explored. “Racism is not the product of race,” Roberts emphasized, but rather “race is the product of racism.” The idea that certain groups of people are naturally entitled to dominate other groups came first, she said. Accepting that idea then required the political division of people into races both to govern unequal societies and to pretend that social inequality is natural. She suggested keeping in mind that racism necessitates the invention of race when considering scientific questions.

Structural Racism

Structural racism is a significant contributor to racial inequalities in health. As an example, Roberts noted that the maternal mortality rate in the United States has been steadily rising, in contrast to nearly all other developed countries and even many developing countries, where it is declining. Furthermore, she said, black women are three to four times more likely than white women to die from pregnancy-related causes. Evidence of the role of structural inequalities in this disparity abounds, yet research continues to look for innate biological characteristics to explain the higher rates of black maternal mortality as well as black infant mortality.

To illustrate, she cited a peer-reviewed journal article that described a study of the role of “black race independent of other factors” in pre-term birth (Kistka et al., 2007). The hypothesis of the study presumes to strip away all social determinants of health and test some essence of black race as the cause of the increased risk of pre-term births. In addition to the study’s failure to define “black race” or to control for all significant social determinants, the central flaw with such hypotheses is that race itself is not a risk factor and should never be treated as such, Roberts said. Racism, however, is a risk factor, and the numerous inequities that are apparent across racial groups are the result of structural inequalities and racism, she said.

The Embodiment of Racism

It is important to recognize, Roberts said, quoting her own work, that “race is not a biological category that naturally produces health disparities because of genetic differences. Race is a political category that has staggering biological consequences because of the impact of social inequality on people’s health” (Roberts, 2018, p. 129). This claim is based on an increasing body of research on the ways in which racism is embodied. She

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

highlighted an opinion piece from The New York Times titled “We’re Sick of Racism, Literally” and said there are many studies now on this topic.1

Roberts urged researchers to study how inequitable structures are embodied by individuals and groups—and then to address those structures—rather than focusing on innate biological differences and biological interventions. The Tuskegee syphilis experiment2 is often cited as one of the reasons why black people are often reluctant to participate in clinical research, Roberts said, but people are also reluctant to participate in research that is geared toward “fixing them” rather than addressing the underlying social structures that they know are harming their health.

Promoting Structural Change

To make societal structural change a reality, it will be necessary to understand who has an investment in keeping things the way they are and who is invested in changing society, Roberts said. Those who are socially disadvantaged have the greatest stake in structural change, she said, and it is therefore important that they be included in discussions of bioethics in research. In contrast, those conducting the research typically have little stake in structural change and, in fact, often benefit from preserving the status quo. Roberts mentioned the current discussions of the bioethics of gene editing as an example. Those engaged in gene-editing research have a greater stake in promoting genetic enhancement as a method to improve the human condition, she said, and less of a stake in promoting societal change. More diverse and meaningful stakeholder engagement in discussions about research ethics and the research agenda is needed before a more diverse population can be expected to participate in research, she concluded.

FEDERAL INDIAN LAW AND BIOETHICS

To start her presentation, Hiratsuka noted that the workshop was taking place on the ancestral lands of the Anacostans, also documented as the Nacotchtank. The District of Columbia and surrounding areas in Maryland and Virginia along the Anacostia and Potomac Rivers were once home to many sovereign indigenous peoples, including the Piscataway, the

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1 See https://www.nytimes.com/2017/11/11/opinion/sunday/sick-of-racism-literally.html (accessed April 15, 2020).

2 The Tuskegee syphilis experiment refers to an unethical clinical study (Tuskegee Study of Untreated Syphilis in the Negro Male) carried out from 1932–1972 by the U.S. Public Health Service. The goal of the study was to understand the natural history of untreated syphilis; however, the African American men involved in the study did not receive accurate information about the risks associated with the study. Researchers also withheld penicillin from participants.

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

Pamunkey, the Nentego also known as the Nanichoke, the Mattaponi, the Chickahominy, the Monacan, the Powhatan, and the Patawomeck. Indigenous people in the District of Columbia area continue to fight for federal government recognition of their nations and the right to establish a government-to-government relationship with the United States, Hiratsuka said. Hiratsuka is a member of the Navajo Nation, one of the largest tribes in both population and physical size, and is also of the Winnemem Wintu, a tribe whose legal rights were terminated.

The Federal Regulation of American Indians and Alaska Natives

The peoples of the American Indian and Alaska Native tribes are recognized as both a racial group and a political entity. The American Indian/Alaska Native populations face many of the same bioethical issues discussed thus far at the workshop, but there are also some unique concerns that stem from the political designation of these populations, Hiratsuka said.

There are currently 574 tribes officially listed as “Indian entities recognized and eligible to receive services from the United States Bureau of Indian Affairs,” Hiratsuka said.3 Of those, 231 are Alaska Native tribes. The U.S. Constitution recognizes these American Indian tribes as sovereign nations with the right to self-determination and grants Congress the authority to interact with Indian tribes. The right to self-determination includes authority over how and what type of research may be conducted within tribal communities, Hiratsuka said.

The application of federal Indian law can subject American Indian/Alaska Native people to extensive legal regulation of their rights, Hiratsuka said, and she cautioned that “what can be granted, can be taken away.” For example, tribes have had their recognition terminated, their rights to ancestral lands and to engaging in cultural practices denied, and their access to sacred lands and waters prevented. Tribes have also been prohibited from exercising their tribal authority over non-members in land-use situations, from resolving criminal violations committed by Indians on Indian land, and from prosecuting non-Indians who commit crimes on Indian land.

American Indian/Alaska Native Health and Health Care

As a group, American Indian/Alaska Native people have experienced “deliberate and intentional historical trauma,” Hiratsuka said, and their collective psychological injury spans generations. Assimilation policies and programs separated American Indian/Alaska Native people from their families and tribes and denied them access to sacred lands and cultural practices.

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3 As of February 19, 2020.

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

Historically and to this day, American Indian/Alaska Native people experience significant health disparities relative to the general population and to other minority populations.4

Health care services have been provided to tribes through federally funded organizations, previously through the Department of War and now through the Indian Health Service of the U.S. Department of Health and Human Services. In addition, the Indian Self-Determination and Education Assistance Act of 1975 allows for direct funding of tribes to deliver health care services themselves. The tribally administered health programs have been very successful in improving the health of the population, Hiratsuka said, and they provide another avenue to care besides the Indian Health Service, which she described as chronically underfunded. Provisions of the Indian Health Care Improvement Act address improving current health care services, increasing the services available to urban-dwelling American Indian/Alaska Native people, and promoting the education and retention of health professionals to work in tribal communities.

Research Bioethics

“The path from research to tribal health benefit is long and uncertain,” Hiratsuka said. American Indian/Alaska Native people have faced a range of bioethical transgressions when engaging with the research community, social scientists, and clinical services. These include the failure to be inclusive and transparent, the failure to share the results and the benefits of research, and the failure to protect group and individual rights and confidentiality. Tribal populations that are small and have unique genetic profiles are at increased risk for community identification and stigmatization, she noted. It is also important, Hiratsuka said, to recognize that current national policies regarding study review and approval, participant recruitment and consent, the return of results, and data sharing, storage, and stewardship might not align with tribal sovereignty rights and values.

As a result of these and other ethical failures and harms, members of the American Indian/Alaska Native community remain skeptical about engaging in research. For example, she said, there are concerns about comprehensive, long-term data collection, such as that being done as part of the National Institutes of Health (NIH) All of Us Research Program,5 particularly how tribal members’ data could be misused. Tribal communities

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4 More information about health disparities in the American Indian and Alaska Native tribes can be found at https://www.ihs.gov/newsroom/factsheets/disparities (accessed April 21, 2020).

5 The All of Us Research Program is working to create a database for health research by collecting data from 1 million people living in the United States. See https://allofus.nih.gov (accessed April 15, 2020)

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

are deliberating about whether and how to engage in research, including how best to operationalize respect for both tribal authority and individual autonomy and how to prevent both individual physical harm and group harms.

Southcentral Foundation has been conducting health research, Hiratsuka said, and in her experience, the Alaska Native people are interested in and see benefits in participating. Ongoing community engagement is required, she said, and the research must be conducted under the authority of the tribal nations. Before any research can be done, the organization and the tribal leadership work together to develop an additional process, a community-level review of the research, to ensure that the studies are in alignment with tribal priorities and the values of the community. Because of this, she said, some practices that are standard elsewhere might not be done (e.g., non-tiered broad consent, storage of specimens in national repositories, documentation of pedigrees, genome-wide sequencing). The use of stigmatizing language needs to be avoided, and pre-publication tribal review of manuscripts is also important, she added.

DISCUSSION

Researcher Awareness and Attention to Structural Inequities

Panelists were asked by Anita Allen, the session moderator, to speak about the extent to which researchers understand the impacts of inequality (economic, social), discrimination, and racism on health and disease and what steps could be taken to improve their understanding. For hundreds of years and until relatively recently, the prevailing view in science was that social inequalities in health were caused by innate biological defects, Roberts reiterated. It was the view of a small minority that social conditions were at the root of unequal health outcomes along social lines, she said. This was articulated by W. E. B. Du Bois in his study The Philadelphia Negro (Du Bois, 1899). Du Bois concluded that the reason black people suffered from poor health was political and resulted from their being forced to live in the slums of Philadelphia, Roberts said. Du Bois believed the poor health of black people was not because their bodies could not adapt to freedom or that they were biologically suited to be enslaved. Du Bois also pointed out that the Irish were once thought to be predisposed to consumption (tuberculosis) when they were “unpopular.”

Only recently has research been specifically targeted to understanding how social inequalities are embodied, Roberts said. Research has focused on the role of neighborhood segregation in increased risk for poor health. For example, segregated black and brown neighborhoods are more likely to be in close proximity to highways and to have greater exposure to toxins,

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

such as lead. Research on epigenetics has begun to elucidate the impact of unequal environments, including social environments, on gene expression. Studies have demonstrated that states with higher rates of structural inequality also have a higher rate of heart attacks among black people. Researchers are also studying how exposure to police killings of unarmed black people affects health in the community. Roberts suggested that more funding should be directed toward this important new area of research that examines the effect of structural inequalities on health.

Even in the face of this emerging research, Roberts said, many researchers are still drawn to looking for innate biological explanations of societal differences in health in the hope of developing pharmaceutical or biological cures. Ultimately, study participants know that their health is associated with their structural conditions, but proposals for change in these conditions are rarely generated from these studies. She suggested that more research funding is needed to study the health impacts of policies that address structural inequities. For example, studies have shown the associations between racially disparate arrests of teenagers and poor health outcomes. However, Roberts observed that proposed solutions tend to focus on intervening in the bodies or behaviors of black teenagers, whereas it is often considered unscientific, biased, or inappropriate to propose and study ways to stop police from disproportionately arresting them. A better understanding is needed of how economic, racial, gender, disability, and other inequalities cause poor health outcomes, she concluded, and researchers need to think more broadly about scientific solutions to structural inequities.

Researcher Awareness and Attention to Study Population Worldview

Hiratsuka recalled Hekler’s discussion of power and privilege (see Chapter 3) and his discomfort with being present and observing but not engaging. Minority populations often feel that although they are invited to be present, they are not asked to engage, she said. Hiratsuka mentioned the phrase “not about us without us” and said that American Indian and Alaska Native populations are very interested in engaging in the discussions on who gets to ask the questions, who is conducting the research, what data are being collected, and how those data will be used.

Collaboration with the community is essential for researchers to understand the context in which American Indian/Alaska Native community members live, Hiratsuka said. Few researchers have had the same lived experience as the people from minority communities they are working to serve. For example, does a researcher seeking to develop interventions for diabetes understand that some healthy foods that might be recommended are at odds with traditional foods? The core principles of respect and reciprocity must be adhered to when asking research questions, Hiratsuka

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

said. “What is benefit and who determines benefit, what is harm and who determines harm?” Researchers need to be comfortable letting go, she said, and letting others ask and respond to these questions.

The National Institutes of Health’s All of Us Research Program

Allen asked panelists for their perspectives on the NIH All of Us Research Program. It is important to understand why people are being enrolled according to certain racial or ethnic criteria, Roberts responded. If the goal of a project is to enroll a more racially diverse population, then what meaning of race is being used, she asked, and what are the assumptions about how this diversity would change the project? She noted that there are reasons for enrolling more people of underrepresented races in clinical research that are not based on assumed biological differences between races. One reason could be to extend the benefits of clinical research participation more equitably to a broader group of people. Another reason is to expand the overall diversity of the study population broadly relative to biology, geography, physical characteristics, or other aspects (i.e., not based on an idea that each race is a biologically homogeneous group of people with a particular set of traits).

Roberts noted a concern about the potential uses of any genetic material that is collected. It is not uncommon for DNA collected for one purpose to be used for another purpose entirely, she observed. Selling samples to for-profit companies or sharing them with law enforcement opens up the possibility for discrimination by state or private actors, she said.

Hiratsuka also raised concerns about the purpose and repurpose of the various data types collected as part of the All of Us Research Program. For example, it is not clear who is reviewing and approving research projects on behalf of members of tribal communities or how the interests of tribal communities can be protected when the potential research uses are unclear or without distinct purpose, she said. There is particular concern that a tribal consultation process was not instituted prior to the start of data collection for the project,6 especially given that the goal of the project is to enroll a diverse population, she noted.

Diversity of socioeconomic status is often absent from research initiatives, including the All of Us Research Program, a workshop participant noted, even though the data indicate socioeconomic status is an important determinant of health. One reason that socioeconomic status might not be

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6 More information about current efforts in the All of Us Research Program to engage and consult with tribal leaders from the American Indian and Alaska Native communities can be found at https://allofus.nih.gov/about/diversity-and-inclusion/all-us-tribal-engagement (accessed May 19, 2020).

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

included, Roberts suggested, is because if one rejects the idea that inequities in socioeconomic status are produced by innate biological differences but also believes individual heath is determined primarily by genes, then there would seem to be no reason to include socioeconomic status in the study (i.e., if socioeconomic status is not caused by innate differences, then it is irrelevant to health). Such thinking reflects the assumption that any kind of health problem must stem from innate causes. Roberts expressed concern that the All of Us Research Program is focused too much on the belief that more genetic knowledge is the answer to health problems and inequities.

Terminology Choices Perpetuate Assumptions

The terminology used in the workshop title, “Bioethical Issues in Biomedical Research,” implies that biology is a key determining factor for health, noted a workshop participant. The tools of health are most often pharmaceuticals and medical devices, not approaches to address underlying social determinants of health, the participant said. It is challenging to find the right terminology that includes the social element equally with the biological and acknowledges that human beings do not exist apart from society, Roberts said. Hiratsuka also commented on the use of “emerging” in relation to bioethical issues in the workshop title. These ethical questions have been discussed for decades within communities that experience considerable inequalities, she said.

Groups Needing Additional Representation

A workshop participant agreed with Hiratsuka about the important role of the tribal authority in helping determine whether research should go forward. These bodies complement the work of institutional review boards to ensure that individuals are able to make informed choices about participation and also help to protect the interests of the larger group. As an example, samples preserved from Tay-Sachs research done in the early 1970s were later used for the early breast cancer gene (BRCA) research because they were convenient and available, the participant said. As a result, some of the early discussions referred to BRCA-1 as a “Jewish gene.” Had there been an equivalent authority group representing the interests of the original Tay-Sachs population, they might have foreseen this problem, the participant speculated. The participant asked whether lessons from the tribal consultation process should be generalized, and if so, how would people participating in research decide which groups they best fit in? What characteristics of a person or group might need additional representation?

Hiratsuka said that when her organization is approached about using existing study samples for another purpose, she always tries to obtain the

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

viewpoint of the appropriate tribal governing authority and the community members. It is important to ask what the study participants’ understanding was regarding the purpose and repurpose of their samples. The practice of a governing body pausing to seek community input to help guide their actions is not distinct to tribal governance, Hiratsuka noted. These types of regional consultations are very important, she said.

Even though race is not a biological determinant of poor health, certain groups, including those that are identified as racial groups, do merit special attention, Roberts clarified. The important question, she reiterated, is What is the purpose of the categories being used by researchers? NIH-funded researchers are required to recruit minorities to their studies and to include race in their data analysis. Researchers often use race as a biological category because they believe NIH requires them to do so, Roberts observed, even when race is not relevant to their research aims. Many also believe that they must report their findings by race and try to draw some conclusion about racial differences. NIH should require that researchers, in working to meet its mandate, consider what is meant by race in the context of the study, why race is relevant to the study, and whether, in fact, the risk factor being studied is not race, but racism.

Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×

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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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Suggested Citation:"4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research." National Academies of Sciences, Engineering, and Medicine. 2020. An Examination of Emerging Bioethical Issues in Biomedical Research: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25778.
×
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On February 26, 2020, the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine hosted a 1-day public workshop in Washington, DC, to examine current and emerging bioethical issues that might arise in the context of biomedical research and to consider research topics in bioethics that could benefit from further attention. The scope of bioethical issues in research is broad, but this workshop focused on issues related to the development and use of digital technologies, artificial intelligence, and machine learning in research and clinical practice; issues emerging as nontraditional approaches to health research become more widespread; the role of bioethics in addressing racial and structural inequalities in health; and enhancing the capacity and diversity of the bioethics workforce. This publication summarizes the presentations and discussions from the workshop.

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