Update from the Ethics SIG
Co-Chairs: Megan Allyse, PhD (Mayo Clinic, Minnesota, USA) and Marsha Michie (Case Western Reserve University, Ohio, USA)
We will all miss seeing our colleagues in Montreal this year! However, there are plenty of interesting developments to report at the intersection of prenatal diagnosis/therapy and ethics. Here are just a few:
First on everyone’s mind, of course, is the COVID-19 pandemic. NPR recently interviewed an expectant couple about their concerns, including that they won’t be together for the birth of their daughter. Unfortunately, not much is known about the risks of COVID-19 to pregnant women and their future offspring. An early report from China noted that some babies born to COVID-19-positive mothers have also tested positive for the virus, although it’s not clear whether the transmission happened in utero. So far, the virus has not been found in breastmilk. The small number of cases reported so far in pregnant mothers have been relatively mild. Vanessa Jacoby and colleagues at University of California, San Francisco have begun a US-nationwide study to answer some of these new questions about COVID-19 and pregnancy. You can learn more about this study here.
And with social distancing has come a new era for telehealth, and expanded interest in delivering ethical care through telemedicine. The American Medical Association issued guidance on these issues back in 2016, and rapid changes have come in the US and Europe in the past month, overcoming previously insurmountable regulatory and practical hurdles. Physicians in the UK are “basically witnessing 10 years of change in one week,” reports the New York Times. Genetic counseling has seen significant movement toward telecounseling in recent years. While issues with licensing and payment remain, a recent NSGC blog post offers guidance for genetic counselors and patients, including for prenatal counseling.
Meanwhile, we continue to keep tabs on ethical issues in the clinical implementation of prenatal cell-free DNA screening, or NIPS. Bowman-Smart and colleagues revisited the ethics of NIPS for sex selection in the March issue of Prenatal Diagnosis. And Bunnik and colleagues have published an argument for including NIPS in publicly funded prenatal health care, particularly in countries with universal health care. In particular, they note, financial hurdles such as copayments for NIPS put an unjust burden on families with lower ability to pay--and this limits, rather than promotes, reproductive autonomy. However, Dagmar Schmitz quickly responded that public funding for NIPS can easily be misinterpreted as encouraging the use of NIPS, an argument that disability rights advocates in the US have also made in the past.
Finally, we continue to see rapid progress in research and translation for therapeutic options to improve pregnancy and child outcomes--and ethical debates over these new technologies continue apace. In January, Cohen and colleagues issued a comprehensive review of worldwide regulations around mitochondrial replacement. A new publication by Felicity Boardman renews the call to include the voices and lived experiences of those with genetic disabilities in ongoing ethical conversations about germline gene editing (GGE). In another new publication, Bryan Cwik explores the ethical issues surrounding intergenerational monitoring, likely an important follow-on for clinical trials of GGE. In the January issue of Bioethics, a multi-disciplinary group of European scholars explored regulatory issues around GGE in the EU and worldwide, recommending “flexible regulations that allow for further responsible research.” And the debate continues as to whether GGE is more ethically problematic than selection of embryos using preimplantation genetic diagnosis: V. Hammerstein and colleagues, in the November issues of BMC Medical Genetics, say it is not.
Are you following other emerging or ongoing ethical issues in prenatal diagnosis and therapy? Let us know! You can find us, along with more information about the Ethics SIG, on the ISPD website.