Like many genetic counselors, I wear many hats and carry intersectional personal and professional identities. Take, for instance, this article – which I write as a practicing prenatal genetic counselor who is also an incoming member of NSGC’s Board of Directors (and note the importance that my comments below reflect my own views, and not that of the Board or of my employer). Wearing another hat, I have interviewed hundreds of prospective GCs applying to our university’s training program and have followed a familiar line of questioning and discussion. I’d ask:
“As reproductive GCs, we find ourselves at the intersection of advocating for patient’s rights to end a pregnancy due to the diagnosis of a congenital or genetic condition – and advocating for the highest level of support, resources, and access to services for the next patient in this scenario to care for a child who will be born with that same condition. Have you thought about this juxtaposition before?”
There are many avenues to explore. Yet, in 2022, a new Supreme Court majority pulled the rug out from under all of us who support pregnant patients, who might become pregnant patients, or who believe in the right to privacy in medical care by reversing Roe v. Wade in its ruling in Dobbs v. Jackson Women’s Health. What do we do now? How can we support our patients and providers targeted by heinous state laws criminalizing those providing and seeking well-established, safe, and routine abortions as healthcare?
In reflecting on this over the past few months, I found the answer to this crisis was also the answer I’ve been looking for when conferring with applicants. The end of Roe marks a turning point in our country and our profession – and I see no space left for inconsistency in action or values. Genetic counseling must exist as a profession which is UNABASHEDLY pro-choice and anti-forced birth, without perpetuating an ableist narrative of what makes a good or bad abortion. This starts with recognizing all abortion as healthcare that is life-affirming and validating for a patient’s control over their own body and future. We must recognize reproductive justice as a core value and fundamental right. And we must recognize the damage we have caused to both patients seeking reproductive autonomy, and patients with disabilities.
We might begin to handle this apparent juxtaposition of values and communities by ending the narrative that some abortions are justified, and some are less so. Indeed, many of our patients seek abortion after a planned and desired pregnancy is found to have a severely life-limiting diagnosis. We sit with these patients in the most challenging times of their lives, and we carry these experiences with us across our careers. Still - we must STOP placing these stories above any other patient seeking abortion. In a post-Roe world, all patients are at risk of being forced to continue a pregnancy they otherwise do not wish to continue. Recall that according to the Guttmacher Institute, 90% of abortion care in the United States in the past decade occurred before serum screening, cfDNA, or CVS results would have ever been available, and only 5% of abortions are provided after 16-weeks’ gestation (“Induced Abortion in the United States” Fact Sheet, September 2019).
We might also address any similar juxtaposition felt within ourselves by recalling that when our own values or beliefs are affecting the healthcare we offer, we are doing it wrong. Genetic counselors who may personally be uncomfortable or opposed to abortion may well struggle to weather this internal conflict, and those colleagues deserve our support in processing those feelings. As a profession, however, the space for nuance has closed.
Pregnancy is in and of itself a risk to a patient’s health, and all patients deserve access to information about that pregnancy to inform their own decision-making around accepting risk. Genetic testing and ultrasound assessment represent some of that information, and our profession is familiar with how this data can completely shift a patient’s perception of risk. As genetic counselors, we must confront the fact that the intent of our words is often not the same as their impact. When members of our community publicly or privately relay the stories of these diagnoses – often infused with dramatic and emotive rhetoric – we are conflating a conversation about reproductive autonomy with offensive and ableist perspective.
The medical community’s words and attitudes in navigating these diagnoses with patients during pregnancy are fully informed by our own community’s history of eugenics. We must constantly inquire how we can do this better and accept this as a life-long journey for our area of practice. But we must do so on the platform that all patients deserve access to safe and legal abortions in our country, where the only reason they need cite is “I do not wish to continue this pregnancy."
Philip Connors, MS, MPH, CGC is the Lead Genetic Counselor for Boston University Medical Group/Boston Medical Center and Assistant Professor in the Department of Obstetrics and Gynecology at Boston University Chobanian & Avedisian School of Medicine. He provides reproductive genetic counseling services and is engaged in research and policy work surrounding the intersection of genetics and public health – including access issues and health outcomes disparities in genetic counseling, genetic testing, and care promoting reproductive justice.