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 Rothenberg 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.
It didn’t hurt that the play’s actors were bioethics and research veterans. The cast of characters drew from PRIM&R’s key speakers and important thinkers in bioethics. While they did stray from the script for some jokes and jabs, the knowledge of both the play’s writers and its actors illustrated the variety of opinions on complex topics.
The play was a mixture of entertainment and education. But if you missed it at PRIM&R, don’t worry: last year the Oxford University Press published a collection of Lynn and Karen’s writings. The book version of The Drama of DNA has three sections. The first is a version of the play performed at AER14; the second imagines consent and ethical discussions around another fictitious-but-realistic genomics protocol. The third section surveys how some plays and movies from the past decades have wrestled with contemporary issues of genes, heredity, and disease. Lynn told me the goal of the book is to communicate the issues of genomics research in an accessible way. To help keep costs down, Lynn and Karen are foregoing royalties of the book, which is available through Amazon, directly from Oxford University Press, and anywhere useful books about genomics are sold.
Jim Gearhart is a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who have blogged here, on Ampersand, about the conference to give our readers an inside peek of what happened December 4-7 in Baltimore, MD, and how they have used what they’ve learned there since they returned home.