CRISPRcon 2020 Examines Race, Gene Editing and Health Equity

Building on its opening theme’s discussions around journalism and indigenous perspectives, CRISPRcon 2020 partnered with Howard University for its second theme, which tackled race and health equity. The two sessions in this theme explored the relationship among race, gene editing, and COVID-19 and opportunities to responsibly innovate with the meaningful inclusion and amplification of Black voices. The first session on Sept. 15 featured a panel examining  whether CRISPR moves us toward health equity. Panelists set the stage for the discussion by first highlighting the disproportionate impact of COVID-19 on communities of color.

“Of course, everyone is aware that the COVID-19 crisis and pandemic is affecting everyone, but Black Americans and communities of color are experiencing the brunt of the crisis,” said Rod McCullom, a science and technology writer who moderated the discussion.

The panelists noted that the disproportionate impact of COVID-19 reflects longstanding health inequities for communities of color, making a vulnerable population even more vulnerable. The health disparities for these communities include a lack of access to health care, historical and systemic bias, and social factors that impact well-being, among other concerns that intensify the pandemic’s impact. The discussion over access to health care pivoted the conversation toward gene editing technology and the need to better engage people of color in discussions of risks and benefits, foundational research, and the development of new technologies.

“You can’t even get to access until you educate a community. A failed clinical trial is not going to bring about a product,” said LaTasha Lee, vice president, social and clinical research & development at the National Minority Quality Forum.

Debra Roberts, professor and chair of the Department of Psychology at Howard University, highlighted the benefit of diversity and inclusion in gene editing studies noting that it not only expands health equity but strengthens clinical trials.

“The more we include individuals from diverse populations that may have more genetic variation, the more we understand about how this process can impact individuals like them and others long term,” said Roberts.

Carla Easter, chief, Education and Community Involvement Branch, National Human Genome Research Institute at the National Institutes of Health, concurred with Roberts’ plea for expanded health equity and its benefit to the research of gene editing.

“The power of genome-wide associations is really in the numbers,” said Easter. “What you really need is to have large populations of people to be able to be confident in the assignment of particular genes and their association with particular disorders.”

The panelists emphasized that trust is foundational to such efforts to involve more Black Americans in research. This requires understanding how genetic data is viewed in different communities, confronting the historic exploitation of Black communities as test subjects, adhering to informed consent and conforming to regulation, developing effective community engagement and partnerships, and ensuring participants have full access and control over their data. These concerns were taken up in further depth in CRISPRcon’s subsequent panel on amplifying Black voices in pursuit of improved health outcomes (see the recap).

The panelists also touched upon whether heritable genome editing in the United States would or should be permitted and concerns over gene editing reducing genetic variance, among other topics. Watch the entire session below.