Karen Rothenberg, Marjorie Cook Professor of Law at University of Maryland Francis King Carey School of Law, is using the bright lights of the stage to probe the ethical and legal dimensions of emerging medical technologies with a new interactive play, "The Drama of DNA: Anticipating the Future with WGS (Whole Genome Sequencing)." The play was performed by distinguished members of the genomics community on October 22 at the annual meeting of the American Society of Human Genetics in Boston.
Co-authored with psychologist and bioethicist Lynn W. Bush, PhD from Columbia University, the play explores a hypothetical research protocol for deciphering the entire DNA codes of children diagnosed with autism spectrum disorder as well as their unaffected siblings and parents, including their pregnant mothers. The play will bring to life the challenges and potential conflicts of using whole genome sequencing (WGS) in research and medicine.
Genomic technologies can uncover "potent information that extends beyond the individuals whose whole genomes are being sequenced to include blood relatives and ancestral groups," noted Rothenberg.
However, the sequencing is not without risk. "Communicating genomic findings of unknown significance, suggestive of disease or a stigmatizing disorder to healthy individuals, must be carefully weighed against benefits, especially when involving children," Dr. Bush cautioned.
Between each of the three acts of the play, Dr. Bush, Prof. Rothenberg and the "actors" engaged the audience in discussions about the ethical, psychosocial and policy issues that have been raised.
"This play explores the myriad implications of WGS for individuals and society and is certain to elicit great interest from our membership and strong participation from those in the audience," observed ASHG Executive Vice President Joseph D. McInerney. Tickets for the performance were sold out weeks in advance.
Among the professionals who participated in the October 22 performance of the play are Eric Green, MD, Ph.D., Director, National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH); James P. Evans, M.D., Ph.D., Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina, Chapel Hill; Stephanie Malia Fullerton, D.Phil., Associate Professor of Bioethics and Humanities, University of Washington School of Medicine; and Robert Nussbaum, M.D., Professor, Department of Medicine, and Chief, Division of Medical Genetics, University of California at San Francisco.
Their play is one of several analyzed by Rothenberg and Bush for their co-authored book The Drama of DNA: Narrative Genomics (Oxford University Press, forthcoming 2014). The book and the online supplement containing the full text of the plays are intended to help students and working professionals in medicine, law, and other disciplines gain insight into the many ethical, social and psychological issues raised by emerging genomic technologies. Two other plays in the series will be performed at the American Society of Bioethics & Humanities Annual Meeting in Atlanta, and at the Public Responsibility in Medicine and Research (PRIM&R) conference in Boston.
Professor Rothenberg is a leading national expert on legal issues in health care who founded the law school’s Law and Health Care Program and served as dean from 1999-2009. Over the last two decades she has focused her research primarily on the ethical, legal and social implications of genetic testing and research, including the legislative approaches to genetic information in the health insurance and employment context, the impact of genetic research on racial and ethnic populations and women’s health care, and the use of genetic information in the courtroom. Rothenberg is currently serving as the Senior Advisor on Genomics and Society to the Director in the NHGRI and is a Visiting Scholar in the Department of Bioethics, Clinical Center, NIH.