Goals and Practices for Next-Generation Prenatal Testing
Principal Investigator: Josephine Johnston
Funder: National Human Genome Research Institute, National Institutes of Health
The Hastings Center is leading a foundational ethical analysis of next-generation prenatal genetic tests that will inform clinical guidelines and create a research agenda aimed at improving policy and practice.
Prenatal testing is changing dramatically. With greatly expanded low-cost genetic tests – some as simple as a maternal blood test – prospective parents will soon be able to learn far more, far earlier, than ever before about their fetuses’ medical conditions and risks, and some nonmedical traits. These tests raise significant questions for doctors, patients, and health policy.
The project includes an international working group of leaders of major clinical societies, clinical researchers, social scientists, philosophers, and patient representatives. They are examining these key questions: What should be tested for? Are there traits that the tests should not be used to investigate? What policy changes are needed to support ethical use of these tests? What should be tested for, and how ought testing be conducted? Which policies should be altered to support ethical use of next-generation prenatal testing, and in what ways should these policies be changed? What further empirical research is needed to examine how the principles, values, and recommended policy and practice changes play out in practice?