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“The Play’s the Thing” at American Society of Human Genetics Annual Meeting in Boston

A provocative new interactive play, “The Drama of DNA: Anticipating the Future with WGS,” was performed by a cast of distinguished genomics professionals on the first evening, Tuesday, October 22, of the 2013 American Society of Human Genetics (ASHG) annual meeting in Boston. The play was hugely popular. It was sold out two weeks after the availability of tickets was announced and at the end of the play many in the audience were asking how they could implement such an innovative approach at their own institution or organization. In the play, fictionalized characters explored a hypothetical research protocol in which the entire DNA codes of children diagnosed with autism spectrum disorder (ASD), their “unaffected” siblings and parents, including their pregnant mothers, would be deciphered. The play brought to life the challenges and potential implications of using whole genome sequencing (WGS) in research and medicine, said the co- authors, Lynn W. Bush, Ph.D., M.S., M.A., and Karen Rothenberg, J.D., M.P.A. Dr. Bush, a psychologist and bioethicist, is on the faculty of pediatric clinical genetics at Columbia University. Rothenberg, the founding director of the Law and Health Care program and Professor at the University of Maryland School of Law, is Senior Advisor on Genomics and Society to the National Human Genome Research Institute (NHGRI) Director Eric D. Green, M.D., Ph.D., one of the play’s 13 “actors” who performed in the play. Among the other genomics professionals who participated in the play were: Carlos Bustamante, Ph.D., Professor of Genetics, Stanford School of Medicine; Vence Bonham, J.D., Chief of the Education and Involvement Branch of the NHGRI; Jeff Botkin, M.D., M.P.H.., Chief of Medical Ethics, University of Utah Health Care; Malia Fullerton, D. Phil., Associate Professor of Bioethics and Humanities, Clinical Director of Neurogenetics, University of Washington School of Medicine; Jacinda Sampson, M.D., Ph.D, Assistant Professor of Neurology, Clinical Director of Neurology Program, Columbia University Medical Center; Virginia Sybert, M.D., Clinical Professor, Division of Medical Genetics, University of Washington School of Medicine; Heidi Rehm, Ph.D., Associate Director, Harvard Medical School Center for Hereditary Deafness; Howard Levy, M.D., Assistant Professor of Medicine, Johns Hopkins Medicine and the McKusick-Nathans Institute of Genetic Medicine; Brynn Levy, Ph.D., Director, Clinical Cytogenetics Laboratory, Associate Professor of Clinical Pathology, Columbia University College of Physicians & Surgeons; Barb Biesecker, Ph.D., Head, Genetic Services Research Unit, NHGRI; Wendy Uhlmann, M.S., C.G.C., Clinical Assistant Professor, Departments of Human Genetics and Internal Medicine, Genetics Counselor/Clinical Coordinator, Medical Genetics Clinic, University of Michigan Medical School; James P. Evans, M.D., Ph.D., Bryson Distinguished Professor of Genetics and Medicine, University of North Carolina, Chapel Hill; and Robert Nussbaum, M.D., Professor, Department of Medicine, and Chief, Division of Medical Genetics, University of California at San Francisco. “The Drama of DNA” is a creative approach to enhance professional understanding and stimulate interdisciplinary discourse on the ethical, social, and psychological issues raised by WGS, according to the co-authors. They added that the rapidly declining cost of WGS has exponentially increased the demand for its clinical applications and the ethical challenges facing health professionals, individuals, families, and society, said the co-authors. Because the field is still evolving, these challenges are even more complex because so much uncertainty exists about the probability that a gene or genetic trait will be expressed. “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,” said Dr. Bush. Genomic technologies can uncover “potent information that extends beyond the individuals whose whole genomes are being sequenced to include blood relatives and ancestral groups,” added Rothenberg. For example, the results of WGS of an unaffected brother or sister of a child with a severe chronic disease may reveal that the sibling has a genetic predisposition for another disorder, such as a life-threatening heart problem. Or, WGS may indicate that the DNA of the fetus of the child’s pregnant mother has one or more of the genes that increases risk for developing an autism spectrum disorder (ASD) or another condition. “Such genomic ‘incidental’ findings can be emotionally unsettling, particularly when neither families nor professionals fully anticipate the range of findings that could be discovered by WGS, as well as the impact of that information on individuals,” said Dr. Bush. Some consent documents signed prior to WGS allow individuals to decline receiving information about incidental findings. “But, there is little consensus regarding under what circumstances, if any, an individual’s or family’s request ‘not to know' may or may not be honored,” said Rothenberg. Between each of the three acts of the play, Dr. Bush and Rothenberg and the “actors” engaged the enthusiastic audience in discussions about the ethical, psychosocial, and policy issues that had been raised. “This year's scientific program illustrates the increasing power, accessibility, and importance of whole genome sequencing in the clinical setting, and many of our members have been instrumental in the development and application of the technology,” said ASHG Executive Vice President Joseph D. McInerney. “This play explored the myriad implications of WGS for individuals and society and elicited great interest from our membership and strong participation from those in the audience," McInerney added. “The Drama of DNA” and other plays co-authored by Dr. Bush and Rothenberg have been adapted for a book to be published by Oxford University Press. The American Society of Human Genetics is the primary professional membership organization for nearly 8,000 human genetics specialists worldwide. The ASHG Annual Meeting is the world's largest gathering of human genetics professionals and a forum for renowned experts in the field and, this year, runs through Saturday, October 26.For more information about the ASHG, visit: http://www.ashg.org. [2013 ASHG Annual Meeting]