Article submitted to Global Updates, January 2018
Recent Developments in Prenatal Care and Ethics
We in the prenatal ethics community have been closely following recent developments in prenatal screening, diagnosis, and therapy. One item that has received a great deal of ethics attention has been a proposal for “reflex screening,” which would reserve a portion of a patient’s blood sample from serum screening and, in the event of a screening result that indicated an elevated risk, "reflexes" the sample for cfDNA screening. Patients would not be notified until results had been returned from both screens. The principal investigators of the study have argued that reflex screening represents an improvement over typical contingent screening protocols, avoiding patient distress in cases where a false positive serum screen can be ruled out after cfDNA screening. However, responses from bioethicists have been less enthusiastic. Of particular concern is that women are making a decision to undergo genetic screening before they know their serum screen results. As many practitioners know, women often make very different decisions in light of high-risk results. Catherine Joynson of the Nuffield Council on Bioethics recently argued that “the reflex model may not provide women with enough opportunity for discussion and reflection,” inhibiting informed decision-making about cfDNA screening. Similarly, Vardit Ravitsky of the Bioethics Program at Université de Montréal writes that reflex screening “is a step towards the 'routinization' of prenatal screening” and “faces enormous challenges regarding informed consent.” These responses suggest that reflex screening may pose challenges for ongoing efforts to improve standards of patient education and informed consent for prenatal screening.
Also in the news recently is the first baby born in the United States from a transplanted uterus. The baby boy was born on December 1 at Baylor University Medical Center in Dallas, Texas. The uterus was donated by a volunteer named Taylor Siler, a registered nurse with two children, who has no connection to the couple. “I have family members who struggled to have babies, and it's not fair,” Siler told reporters. “I just think that if we can give more people that option, that's an awesome thing.” However, some bioethicists think more research needs to be done before the procedure is normalized. Writing in the Hastings Center Report, Christie Cole Horsborough argues “that empirical data exploring prospective recipients’ motivations and their perceptions of the benefits of the procedure in the context of their lived experiences are critical to a robust analysis of the ethical dimensions of uterine transplantation.”
In other news, the Ethics Special Interest Group is pleased to announce that we will once again be partnering with our friends in the Genetic Counseling Special Interest Group to offer a preconference course for the 2018 Annual Meeting of ISPD in Antwerp. The half-day course will focus on international variation in law, culture, and medical practice and how it affects prenatal care practice. As with last year’s course, it is designed as an interactive, case-based discussion that will draw on the experience and knowledge of participants and their day-to-day practice. Local discussions will be guided by subject and geographic area experts, and participants will rotate among them to explore a variety of perspectives. We hope that participants from a broad sample of geographic and sociocultural contexts will help generate a lively and mutually beneficial discussion among all participants.
A recording of last year’s pre-conference course, “Ethics in Genetic Counseling,” is now available through ISPD at a discounted price for members. If you were unable to attend, this may be a great resource for you.
Finally, as we mentioned at last year’s SIG meeting, we have been encouraged to develop online resources for ISPD members. We are considering ideas for potential online training courses and webinars that could offer educational credits, and welcome suggestions as we move forward in this area. If you have an idea or a question you’d like to see developed into an online resource, please let us know--and if you would like to work on this project, we welcome input and collaboration.
Best Wishes for the New Year,
Megan and Marsha
The Ethics of Reproductive Testing and Fetal Therapy SIG provides a forum for engagement, education and support around ethical issues arising in reproductive testing and fetal therapy.