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Ethical Decision-making for Newborn Genetic Screening

Hastings InvestigatorsThomas H. Murray and Mary Ann Baily

Funder: National Human Genome Research Institute

New screening technologies and new knowledge about the origin and treatment of genetic conditions pose challenges for ongoing public health programs in newborn screening. Public policy decisions about what to test for and how to pay for screening in a rapidly changing health care environment have become more complex. This project developed in-depth ethical analysis in four critical areas of newborn screening: fairness in the distribution of the costs and benefits of screening; information, consent, and privacy; consultation and decision-making; and race, ethnicity, and socioeconomic status. Its goal was to provide guidance to the professionals, policy=makers, and members of the public who make decisions about newborn screening. The project led to a book, Ethics and Newborn Genetic Screening: New Technologies, New Challenges, Mary Ann Baily and Thomas H. Murray, eds. (Johns Hopkins University Press, 2009)