CUIMC experts to explore effects of genetic knowledge on individuals with autism and their families

The Center for Research on the Ethical, Legal and Social Implications of Psychiatric, Neurologic, and Behavioral Genetics at Columbia University Irving Medical Center (CUIMC) will bring its expertise to bear on exploring the effects of new genetic knowledge on individuals with autism spectrum disorder and their families. The Center, which was awarded a four-year renewal grant from the National Human Genome Research Institute on September 17, 2018, brings together clinicians and researchers from across CUIMC along with colleagues from The Hastings Center, a nonpartisan, nonprofit research institute that addresses fundamental ethical and social issues in health care, science, and technology.

As knowledge of the genetic contributions to psychiatric, neurologic, and behavioral (PNB) traits and disorders grows rapidly, this information is quickly being translated into clinical practice. The characteristics of PNB genetic information, however, evoke complex questions about the impact that such data will -- and should -- have in both clinical and non-clinical settings. PNB genetic data speak to many of the characteristics most associated with individual identity, and to many of humankind's most stigmatized afflictions. Yet, because of these very characteristics, genetic information associated with many PNB disorders may affect how people view themselves and how others see them.

Over the last five years, the Center has worked to develop strategies guiding the use of PNB genetic data in clinical and research settings, as well as in courts, legislatures, and regulatory agencies. By integrating empirical researchers with experts in ethics, philosophy, law, public health, and public policy, the Center has helped point the way toward beneficial use of the latest scientific findings in this new area of genetics.

Building on this research, the Center will, over the next four years, zero in on the impact of personal genomic information given to individuals already diagnosed with autism and their family members. Researchers will use surveys and interviews to assess reactions to genomic test results, including the impact on views of normality, capacity, responsibility, treatability, and prognosis, along with systematic consideration of the consequences for decision-making and life-planning. To conduct this research the Center will partner with the SPARK study -- an ongoing study, funded by the Simons Foundation, to sequence the genomes of 50,000 persons with autism and their parents.

"We at The Hastings Center have long been interested in pressing practical questions regarding the delivery of genomic information and in deep theoretical questions regarding the nature of human responsibility and identity," said Erik Parens, PhD, senior research scholar and director of The Hastings Center Initiative in Bioethics and the Humanities. "We are thrilled with the opportunity to take on both kinds of questions at once in our continuing collaboration with Dr. Appelbaum and the terrific team at Columbia."

Advances in PNB genetics affect a wide range of people--from scientists and clinicians, to courts and policy makers, to patients and families. The Center is committed both to engaging these diverse stakeholders in its research and to translating its findings in ways that meet their needs. Annual conferences will reach out to help educate professionals and lay people about these issues. To ensure the future of these endeavors, the Center will continue its multidisciplinary post-doctoral training program to nurture the next generation of leaders in ethical, legal, and social research in PNB genetics.

"People with neuropsychiatric and behavioral conditions increasingly will be receiving test results demonstrating genetic variants related to their disorders. We are very excited to have the opportunity to explore the impact of this information, so that we can be prepared to help patients and family members deal with it," said Paul Appelbaum, MD, director of the Center and director of the Center for Law, Ethics and Psychiatry and Elizabeth K. Dollard Professor of Psychiatry, Medicine & Law at Columbia University Vagelos College of Physicians and Surgeons.

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