An Examination of Emerging Bioethical Issues in Biomedical Research Proceedings of a Workshop (2020) / Chapter Skim
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4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research
4 Understanding the Impact of Inequality on Health, Disease, and Who Participates in Research
Pages 51-62
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From page 51... ...
• More diverse stakeholder engagement in the discussions about research ethics is needed before a more diverse population can be expected to participate in research. This will require investment in research on the effects of inequitable structures on health, including those that reinforce inequalities based on race, socioeconomic status, gender, and disability, among others.
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From page 52... ...
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 B lumenbach 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.
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From page 53... ...
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 con tinues to look for innate biological characteristics to explain the higher rates of black maternal mortality as well as black infant mortality.
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From page 54... ...
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.
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From page 55... ...
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.
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From page 56... ...
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.
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From page 57... ...
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.
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From page 58... ...
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.
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From page 59... ...
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.
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From page 60... ...
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.
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From page 61... ...
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.
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