Published: Thursday, September 3, 2020, 10:00 a.m. U.S. Eastern Time
Media Contact: Kara Flynn, 202.257.8424 press@ashg.org
ROCKVILLE, MD —The American Society of Human Genetics (ASHG) today issued a new organizational position statement strongly affirming the need for broad public participation in genetics and genomics research and highlighting the need to understand and protect against potential harm to vulnerable populations. In doing so, it highlighted key objectives the research community should pursue to support both goals.
The Perspective, which appears today in The American Journal of Human Genetics (AJHG), highlights the critical importance for research cohorts to reflect humanity’s diversity, and actions scientists can take to address the ethical and social concerns arising from studies of minority and Indigenous populations.
“Research with diverse populations greatly enhances our understanding of variation in the genome, yet most participants recruited into genetics and genomics research studies are of European ancestry,” the Society stated. “The potential benefits of increasing the diversity of participants recruited into genetic and genomic studies are profound for science and for broader progress in the improvement of human health. It will be essential for the research community to put in place policies and practices that substantively address and rectify the concerns of potential participants from vulnerable populations.”
This ASHG Perspective comes at a time when the ASHG has been holding important, formative discussions for how it, and its larger research community, can advance diversity and inclusion in science as a priority, including diversity in the workforce. Earlier this year, ASHG issued a policy statement emphasizing its importance and areas for Society focus.
In today’s Perspective, ASHG acknowledged the history and potential harms in working with vulnerable and historically marginalized communities: “These concerns are based upon well-known historical examples of research malpractice that disproportionately affected racial minorities and indigenous populations, often the result of systemic racism. As a result of this history, and for its own inherent value, it is essential for researchers in genetics and genomics to build trust among participants in vulnerable populations through community engagement.”
The Society set five key principles that should apply to all research:
- Researchers must seek informed consent, which should be shaped in consultation with the community.
- Funders should commit to providing research opportunities that adequately fund and reward the pursuit of cohort diversity.
- Investigators have a responsibility to pursue the recruitment of diverse cohorts and to instill the scientific importance and benefit of using diverse cohorts in research studies.
- The genetics and genomics research community should sustain efforts to increase diversity in the workforce.
- Research institutions should prioritize training in practices that enhance ethical engagement of diverse populations, create skill-building for community outreach, and promote effective communication strategies.
Looking forward, the Society will continue to provide guidance to the genetics community in pursuing increased cohort diversity in a way that minimizes the risk of harm, as well as continuing to provide a forum for identifying and overcoming the roadblocks that prevent more diverse participation in biomedical research.
“ASHG urges members and all individual scientists to integrate [these principles] into their research agendas and institutions, and to speak out through their own communication and advocacy, to support diversity in research cohorts and the responsible pursuit of such efforts,” the Society said.
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About the American Society of Human Genetics (ASHG)
Founded in 1948, the American Society of Human Genetics is the primary professional membership organization for human genetics specialists worldwide. Its nearly 8,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses, and others with an interest in human genetics. The Society serves scientists, health professionals, and the public by providing forums to: (1) share research results through the ASHG Annual Meeting and in The American Journal of Human Genetics; (2) advance genetic research by advocating for research support; (3) educate current and future genetics professionals, health care providers, advocates, policymakers, educators, students, and the public about all aspects of human genetics; and (4) promote genetic services and support responsible social and scientific policies. For more information, visit: http://www.ashg.org.
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