Using Population Descriptors in Genetics and Genomics Research A New Framework for an Evolving Field (2023) / Chapter Skim
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6 Implementation and Accountability
6 Implementation and Accountability
Pages 149-164
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From page 149... ...
In the time following the historic social events of 2020, there has arisen an urgency in research and health care institutions to examine, address, and change the structural racism that is embedded in many systems (Bailey et al., 2020; Churchwell et al., 2020)
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The committee strongly believes that for this report to change both individual and collective behavior, the recommendations need to be actionable, the implementation processes should contain incentives, and the people and institutions involved need to be held accountable on an ongoing basis and in meaningful ways to demonstrate progress toward specific goals. IMPLEMENTATION ACROSS THE GENOMICS RESEARCH ECOSYSTEM There are many players in the genomics research ecosystem.
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. To improve this misalignment of identities, researchers working in close partnership with individual study participants, and especially communities, can work to better understand how individuals identify themselves and, in some cases, why these are the descriptors or group labels they will use.
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By working collaboratively with study participants, researchers will better understand the identities, cultures, traditions, and practices of communities, thus improving the understanding of the types of infor mation that should and could be collected for a strong study where the outcomes could, in turn, have the ability to improve the health of the communities who participate. Funders of Genetics and Genomics Research Funding agencies and organizations can play a major role in changing how population descriptors are used.
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To assist both researchers and reviewers, a table or form would permit a more objective determination as to whether a proposal has addressed the necessary issues around using and reporting population descriptors and can be equally applied across all proposals. A similar form could assist in the poststudy reporting process, since many times the anticipated labels may change depending on the sample composition and how individuals self-identify.
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Professional Societies and Research Journals Over the past several decades, a number of professional societies have developed statements or guidelines on race, ethnicity, human diversity, and multicultural practices. Statements, such as the one on race published by the American Association of Physical Anthropologists (AAPA, 1996)
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As such, "getting published" can be a powerful incentive, so journal editors have leverage that could encourage researchers, and perhaps other entities within the research ecosystem such as research institutions, to change how they understand and use descent-associated population descriptors. For example, a journal could adopt the recommendations in this report by creating editorial review checks to ensure that authors whose papers are sent out for peer review have adhered to these recommendations.
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Research Institutions The climate and infrastructure of research institutions greatly influence the ways in which research is carried out within their organizations. Thus, universities, private research centers, and government agencies are key partners in assisting researchers as they strive to implement this report's recommendations and adhere to its guiding principles.
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Factors that interfere with accurately determining these effects create barriers to optimal genetics research that may be addressed through study design and analysis. Geneticists and researchers using genetic and genomic tools may lack the social and environmental data they need to analyze the most appropriate nongenetic variables.
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Conveying that information accurately and effectively to the lay public is the purview of science journalists and other science communication specialists. As the genomics research ecosystem evolves in how it uses descent-associated population descriptors, and as genetics and genomics research advances common understanding of human health and disease and becomes more popular, partnerships between science journalists and basic and clinical scientists will be ever more important.
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Funding agencies, research institutions (including associated institutional review boards and other activities with research participants) , research journals, professional societies, and lay media professionals should evaluate their processes and structures related to the use of population descriptors in genomics research and report to their communities whether or not they are facilitating the recommendations in this report.
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The recommendations in this report have been developed from the committee's collective experience researching, writing about, and using population descriptors. But there is more that can be done to understand how population descriptors are used in genetics and genomics research and the effects that these descriptors have in medicine and in health disparities studies.
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Such advisory groups could: • periodically reevaluate established best practices on the use of descent-associated population descriptors to ensure they reflect the current state of the science and ongoing commitment to ethical and empirical principles; • advise funders and other relevant parties on the use of popula tion descriptors and their implementation; • facilitate the coordination of international best practice sharing; • provide a venue for input from the broader community, includ ing research participants; and • monitor and measure changes adopted by funders, research ers, journals, societies, and other relevant parties based on the uptake of best practices identified. PARTING THOUGHTS Despite the many recommendations, guidelines, and strategies promoting the ethically and empirically sound use of descent-associated population descriptors, there has been relatively little change in how any entities within the genetics and genomics research ecosystem use these descriptors or require them to be used.
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REFERENCES AAA (American Anthropological Association)
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2008. The ambiguous meanings of the racial/ethnic categories routinely used in human genetics research.
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