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. 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?
With a $1.1 million grant from the 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. The new three-year project will be led by Josephine Johnston, director of research at The Hastings Center, and Erik Parens, senior research scholar. Co-investigators on the project are Hastings Center research scholar Sarah McGraw and Hastings Center president Mildred Solomon. Paul Appelbaum, a professor of psychiatry, medicine, and law, and Wendy Chung, a molecular and clinical geneticist, both at Columbia University, along with Vence Bonham, a health services and policy researcher at NIH, will join Johnston and Parens to form the project's steering committee.
“The next generation of prenatal tests are set to offer prospective parents an enormous amount of information about the genetic make-up of their fetuses,” Johnston explains. “It is our job, through this project, to identify policies and practices that can inform, support and empower patients to make testing decisions that are consistent with their goals and values.”
To consider how best to deploy these new prenatal tests The Hastings Center has recruited an international working group of experts and representatives. They include leaders of major clinical societies, clinical researchers and social scientists investigating prenatal testing, philosophers, and patient representatives.