New England Journal of Medicine
August 10, 2017 Vol. 377 No. 6
Supporting Women’s Autonomy in Prenatal Testing
Johnston, R.M. Farrell, and E. Parens
…It is daunting to envision informed consent processes robust enough to prepare patients to receive information as voluminous and complex as sequencing results. Yet these studies clearly indicate that women have a strong preference for receiving help in parsing the distinction between empowering and disempowering information. As part of that process, clinicians have an ethical responsibility to discuss the small but real possibility that information from testing will lead women to face pivotal decisions about ending or continuing their pregnancy.
The need for fully informed consent in prenatal screening and testing has never been more urgent. Meeting this need will require adoption of reimbursement policies and professional practice guidelines that support clinicians in breaking with current routine practices, which too often involve dispensing with or failing to adequately carry out an informed consent process. It will also require funding for development of approaches to pretest and posttest education and counseling that empower patients to decide whether to be tested and what to do after receiving their results. Policies in a range of areas, from education to social welfare to health care, that support people with disabilities and their families are also needed so that women’s choices are less likely to be constrained by financial concerns or fear for the future welfare of a disabled child. And respect for women’s autonomy also crucially requires access to abortion services. Only with these practices and policies in place can women’s decisions about prenatal screening, diagnostic testing, and termination or continuation of pregnancy be truly free and informed.