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Parents best equipped to make decisions on genetic testing, return of results

March 5, 2014

Technology often outpaces ethical discussions; this has become evident in the current recommendations around next-generation genomic testing and the way in which results are handled for pediatric patients. Expert working groups in genetics have recommended different policies. However, a team of researchers at the Medical College of Wisconsin (MCW) and Children’s Hospital of Wisconsin believe that until research possibly proves differently, parents are best-suited to make decisions about what genetic testing results are provided to children and their families.

The commentary is published in the American Journal of Bioethics http://www.tandfonline.com/doi/full/10.1080/15265161.2013.879959. Kimberly A. Strong, PhD, assistant professor of bioethics and medical humanities and primary faculty for the Program in Genomics and Ethics at MCW, and Thomas May, PhD, the Ursula Von der Ruhr Professor of Bioethics at MCW, are the lead authors of the paper.

Children’s Hospital of Wisconsin and MCW founded the world’s first clinical genomics sequencing clinic in late 2010. The opening of that clinic necessitated a strategy around the return of secondary results, also called incidental findings, which may be discovered in the exploration of the patient’s genome or exome while searching for primary causes of disease. The team adopted a strategy based on the current societal norms regarding parental authority.

“The law generally views parents to be in the best position to weigh the short-term and long-term interests of their children, and we believe that absent evidence that would indicate otherwise, the default position should be parental informed consent,” said Dr. Strong. “That informed consent involves detailed genetic counseling both before and after the decision to pursue genomic sequencing, so parents understand the choices they are making.”

Secondary findings can involve mutations in a gene that are known to cause disease, and may or may not have existing treatments, but can also involve mutations that carry with them a predisposition to develop disease (i.e. Alzheimer’s), but it is impossible to accurately predict at this time who will and who will not develop disease.

Other authors of the commentary include Arthur R. Derse, MD, JD, professor of bioethics and medical humanities and emergency medicine and director of the Center for Bioethics and Medical Humanities at MCW; David P. Dimmock, MD, associate professor of pediatric genetics at MCW and a clinical geneticist at CHW; Kaija Zusevics, MPH, PhD, Program in Genomics and Ethics postdoctoral fellow at MCW; Jessica Jeruzal, Program in Genomics and Ethics program coordinator at MCW; Elizabeth Worthey, PhD, assistant professor of pediatric genetics, MCW; David Bick, MD, professor and chief of genetics at MCW and CHW; Gunter Scharer, MD, associate professor of pediatric genetics at MCW and clinical geneticist at CHW; Alison La Pean Kirschner, MS, research genetic counselor at MCW; Ryan Spellecy, PhD, associate professor of bioethics at MCW; Michael H. Farrell, MD, associate professor of medicine at MCW; Jennifer Geurts, MS, genetic counseling manager at MCW; and Regan Veith, MS, genetic counselor at CHW.

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