Bioethics Blogs

A Dramatic Narrative Drama Reinforces AER14’s Lessons

by Jim Gearhart, BA, Member of the Board of Directors for Quorum Review IRB

If you attended PRIM&R’s 2014 Advancing Ethical Research (AER14) Conference in December, there’s a good chance you attended the performance of “The Drama of DNA: Implications of Genomic Protocols that Reconceptualize the Boundaries of ‘Normalcy.'” I’m saying the chances were good because the venue for “The Drama of DNA” was a large conference room filled to standing-room only capacity. In the time since the AER14, I have recalled more than once the themes that “The Drama of DNA” shared with us.

The “Drama of DNA” sprang from the collaborating minds of bioethicists Karen Rosenberg and Lynn Wein Bush. The play portrayed two committee meetings during which the members explored the ethical questions of genome wide sequencing. The topic under discussion was a fictitious study protocol that would test and map the genomes of autistic children, their parents, and at least one sibling. The goal of the play was to highlight the difficult questions associated with genomics research by acting out the conflicts occurring in both meetings.

For me, the play’s approach worked. The issues that the players introduced reinforced key topics from AER14’s daytime sessions. The actors’ lines echoed some of the conference’s key themes: biobanking; how to manage incidental findings; risks of research versus the benefits; and conducting research with vulnerable populations. Seeing a group argue those key points, even according to a script (with some improvisation), helped cement the main ideas in memory. And the lessons echo now, too, for anyone who is following events in the field of genomics this year whether it’s the progress of 23andMe’s business model; the Obama Administration’s ambitious proposal for more biomarking research; or the latest protocol to come your way with a biobanking or genome-mapping component.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.