Susan Wolf in Science Magazine on Gene Sequencing Debate

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Thursday, May 16, 2013

Science has just published online an article by Consortium founding chair Susan M. Wolf, George J. Annas (Boston University), and Sherman Elias (Northwestern University) on a major controversy over how to handle incidental findings in medical genomic sequencing. Their article on “Patient Autonomy and Incidental Findings in Clinical Genomics” argues that the American College of Medical Genetics and Genomics (ACMG) made a serious mistake when it issued a practice statement in March insisting that clinical sequencing for any medical indication should add analysis of 57 extra genes to look for disease-causing variants, even if the patient does not want this and even if the patient is a child. Wolf et al. argue that the ACMG statement and its subsequent “clarification” in April reject long-established legal and ethical principles of patient autonomy and the “right not to know” unwanted genetic information. Wolf’s article is accompanied by a response from Amy Lynn McGuire (Baylor College of Medicine) and colleagues, entitled “Ethics and Genomic Incidental Findings.” Two of those authors were co-authors of the March ACMG statement.