WSJ Profiles One Family's DNA Sequencing Privacy Challenges

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Monday, September 28, 2015

An article in today's Wall Street Journal describes one family's struggles regarding how much DNA information to share with each other. Identical twins Kathy Giusti and Karen Andrews have been diagnosed with two different types of cancer and hold divergent opinions, leading to tough questions about how much each family member wanted to share, wanted to know, and the privacy issues and sense of obligation the situation evokes. In the piece, Consortium chair Susan M. Wolf, JD, notes, “Most of our law and ethics is about single individuals, their rights, their protection, their autonomy. But genetics is not about that. Genetics is about families.” Also in the article, Bonnie LeRoy, Director of the University of Minnesota's Graduate Program in Genetic Counseling, describes how she helps families wrestle with these decisions. Family genomics and privacy is the subject of an NIH-funded grant co-led by Susan Wolf, Gloria M. Peterson, PhD of the Mayo Clinic, and Barbara Koenig, PhD, of the University of California, San Francisco.