Ethical Decisionmaking for Newborn Genetic Screening
Project launched in September 2002
Funded by: 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 are becoming more complex. And the increasingly complex information produced by new screening capacities is making it more difficult to assure that parents are adequately informed, while changes in health care financing are challenging traditional approaches to providing access to screening and follow-up services.
This project will develop 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 decisionmaking; and race, ethnicity, and socioeconomic status. Its long-term goal is to provide guidance to the professionals, policymakers, and members of the public who make decisions about newborn screening.
In September, 2004, The Hastings Center and the March of Dimes held a meeting to enhance participants’ understanding of new DNA based technologies in Newborn Screening. Topics included: technical challenges; clinical, social and economic issues; and practical and public health implications of available technologies.