Advances in genomics and informatics have opened up new avenues in population health research, fueling medicine’s move away from a “one-size-fits-all” approach to an era in which disease treatment and prevention “takes into account individual variability in genes, environment, and lifestyle for each person” (National Library of Medicine).
But for some communities, the promise of precision medicine raises not hope for better health outcomes but concerns about the reinforcement of racial stereotypes; the minimization of cultural, environmental, and social determinants of health; and the potential for a repeat of past ethical lapses in research.
The 2017 CCTS Bioethics Symposium, held in Mobile on March 23rd, provided an opportunity for the audience, comprising investigators, community partners, and research administrators, to develop a deeper awareness of these and other sensitive ethical issues of importance to community partners in genetics and genomics-based research projects. The format was interactive, with readings, videos and exercises designed to raise sensitivity and inspire dialogue.
The morning session “Coming to Self and Confronting the Limits of Knowledge: Humility as a Core Principle,” facilitated by Dr. Stephen Sodeke, bioethicist and professor of Allied Health, Tuskegee University, focused on the concepts of ecumenical humility, epistemic humility, and professional humility. The goals of the session were to think deeply, make connections, and examine the idea of humility in research partnerships, lived-experiences, and professional practice. Sodeke explained key differences, “When we have epistemic humility, we can admit that we do not have all the answers to important questions that our research activity will raise, and when we have professional humility, we can acknowledge that every person brings a different perspective to an encounter from which we can benefit.”
The discussion then turned to the concept of phronesis, or practical wisdom. In bioethics, Sodeke explained, phronesis translates to having the capacity for moral insight, to discern what moral choice or course of action is most conducive to the good of the agent or the activity in which the agent is engaged, all things considered. This goal is especially important when working with minority communities and vulnerable populations, he noted.
The afternoon session, “Healing the Wounds of Humiliation in Research Partnerships,” facilitated by Dr. Muhjah Shakir, assistant professor of Occupational Therapy and adjunct professor of Bioethics in Research and Health Care, Tuskegee University, examined the importance of mental models, which inform how people view the world. Researchers need to be prepared to assess the mental models of potential research partners to better understand their concerns about participation. Given past ethical lapses that “may have left old wounds easily reopened,” she stressed the need for active listening skills, patience, and compassionate humility on the part of researchers.
CCTS Director Dr. Robert P. Kimberly summarized the day well when he said, “The complexities inherent in bioethics do not absolve us of the responsibility to make every effort to truthfully explain a study’s goals and the possibility for ancillary findings. We can go a long way with honesty.”
Highlights of the symposium are available on the CCTS YouTube channel. The complete agenda for the symposium can be found here . For a deeper dive on specific bioethical issues in genomics medicine, check out the Center for Genomics monthly seminar series, which is cohosted by CCTS Partners UAB and the HudsonAlpha Institute for Biotechnology. The next seminar, “Appropriate Uses of Genomic Technologies,” will take place May 10th.