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Many Genetic Counselors Want to Be Involved With Reproductive Justice Advocacy, But 'Unsure' How

Pregnant woman in counseling appointment

NEW YORK – Many genetic counselors say they want to be more politically involved in advocacy on abortion, contraception, and other reproductive healthcare issues, but don't know how — suggesting there's a need for educational resources targeted toward this field.

However, who or what organizations should take on that mantle is an open question, as healthcare practitioners speaking out on divisive political issues historically has been controversial. While some argue providers have a responsibility to advocate for access to what they view as essential healthcare, there is also a need to not alienate patients who might hold other views.

"It is unfortunate, although very much true now and throughout much of our history, that reproductive healthcare is a political issue," said Hannah Johnstonbaugh, a genetic counselor at the University of Maryland School of Medicine who focuses on prenatal care. But "for those of us involved in reproductive healthcare on a day-to-day basis especially, advocating on behalf of our patients directly impacts the care we are able to provide."

Johnstonbaugh was the lead author on a study published in the Journal of Genetic Counseling this fall in which researchers found genetic counselors' participation in advocacy efforts related to reproductive justice — defined in part as a right to bodily autonomy over childbearing — lagged their interest in the topic.

For the research, which Johnstonbaugh led as an independent study project during her training in the university's master's in genetic counseling program, she and her colleagues surveyed 192 genetic counselors from the National Society of Genetic Counselors (NSGC) about their individual advocacy efforts related to reproductive justice. The study findings were first presented at the 2022 NSGC annual meeting.

The online survey took place from September to November 2021. While abortion access was a hot-button issue during this time in the lead up to the Dobbs v Jackson Women's Health Organization case, it was before the US Supreme Court made its decision on the case in summer 2022. The decision, which overturned Roe v Wade, found that women do not have a constitutional right to abortion and left regulation of abortion access to states.

In response to the Dobbs decision, more than a dozen states have outlawed most abortions, with implications for genetic counselors providing prenatal diagnoses and discussing care management options with patients. One study of genetic counselors practicing in states with restrictive abortion laws found that vague language and legal uncertainty, for example, affected their ability to counsel patients.

In Johnstonbaugh and colleagues' survey on reproductive justice advocacy, they found NSGC members were "significantly less involved" in reproductive justice advocacy when compared to a group of 60 family planning providers from the Society of Family Planning (SFP), a nonprofit professional organization of physicians, nurses, public health practitioners, and others focused on abortion and contraception. SFP providers served as a "control group" of sorts, Johnstonbaugh said, noting that the research team did expect SFP members to be more active in reproductive justice advocacy. 

Genetic counselors were less likely to regularly participate in reproductive justice advocacy, with 38.1 percent of respondents saying they agreed or strongly agreed that they previously had participated in such efforts, compared to 93.2 percent of providers from SFP.

For example, while 57.2 of respondents from NSGC said they had engaged in advocacy efforts through petition signing, 77.9 percent of SFP respondents did. Just 2.7 percent of NSGC respondents said they had met with elected officials to discuss reproductive justice issues, compared to 74.6 percent of SFP respondents.

A commonly cited barrier to involvement in advocacy efforts was feeling unsure of how to do so, with 23.2 percent of NSGC members disagreeing or strongly disagreeing that they were aware of ways to become involved. By contrast, just 3.4 percent of providers from SFP disagreed, and none said they strongly disagreed.

That suggests that genetic counselors "want to be more involved in reproductive justice advocacy but are uncertain where to begin," study authors wrote. 

It wasn't surprising that genetic counselors said they wanted to be more involved in reproductive justice advocacy but didn't know where to start, said Katelynn Sagaser, a reproductive genetic counselor who was a senior author on the paper while at Johns Hopkins University School of Medicine, a role she has since left.

In fact, the study results "helped to validate a sense that was perceived within the community, but not necessarily something for which there was concrete data," she said. Sagaser left Johns Hopkins in December 2021 for a role as director of genetic counseling at prenatal testing startup Juno Diagnostics, which ceased commercial operations this summer.

In free-text responses to the survey, genetic counselors suggested that education on how to become involved, with resources tailored to specific geographic locations, could increase advocacy involvement, as well as continuing education focused on reproductive justice advocacy and professional organizations developing "calls to action" with concrete action items for members.

But from Sagaser's perspective, NSGC might not be the right organization to develop the educational resources on reproductive justice advocacy, noting that the society is designed to represent broad interests of genetic counseling as a field. "Our field is centered on helping individuals make informed, autonomous decisions," Sagaser said. However, not everyone in the field will agree about policies on abortion access, which puts NSGC and other professional organizations in a difficult position as they determine how to best represent their members' interests.

Further, in recent years, some genetic counselors have expressed frustration with what they view as NSGC's limited advocacy on reproductive rights — specifically abortion in the wake of the Dobbs decision — and called for the organization to do more to support genetic counselors and their role in reproductive care by advocating for policies at the state and local levels. 

NSGC has taken some steps, if not as aggressively as some had hoped: In June of last year, in response to the Dobbs decision, NSGC released an updated position statement on access to reproductive healthcare in which it voiced support for genetic counselors to discuss the "complete range of reproductive options" with patients, including access to abortion, and said it "opposes efforts that disrupt the patient/provider relationship." And in a joint statement with the American College of Medical Genetics and Genomics and the American Society of Human Genetics the same year, the organizations said the Dobbs decision would "limit access to safe reproductive healthcare in many states."

Sagaser suggested entities within NSGC — like the organization's prenatal counseling/ultrasound anomalies special interest group or task force on reproductive freedom, access, and justice — could play a role in pointing interested members to other groups and resources that are specifically focused on reproductive justice advocacy.

But since reproductive justice isn't NSGC's core issue, genetic counselors may have to look outside the organization to "be as effective in this space as we may hope," she said. Joining with organizations already doing this work also ensures that genetic counselors aren't starting from scratch in developing their own reproductive justice advocacy, but instead getting involved in existing efforts.

In response to a request for comment on the Journal of Genetic Counseling paper's findings, NSGC President Deepti Babu in an email said, "our Society remains committed to supporting genetic counselors in providing comprehensive genetic counseling rooted in the aligned goals of disability justice and reproductive justice. NSGC is working amidst an ever-evolving reproductive healthcare landscape to determine the most effective ways to help our members, with a number of genetic counselors involved in these crucial efforts."

Babu said NSGC is analyzing state-level abortion legislation and collecting data from members to assess the effect of these restrictions on genetic counselors' work, and also highlighted a research initiative announced at the NSGC annual conference in Chicago this past fall that will award up to $30,000 for a one-year study investigating the effect of abortion legislation on genetic counseling services related to reproductive care. NSGC issued a request for proposals for the funding this month.

The funding is part of a new research initiative at NSGC that aims to support research that generates evidence in the organization's priority areas. While NSGC leadership knows that abortion legislation is affecting genetic counseling in some regions, the organization needs to better understand the specific impact of the legislation to determine how best to support members, such as through organizational strategies, tools, resources, or partner relationships, Babu said.

"NSGC aims to understand the needs and gaps that genetic counselors working in reproductive healthcare across the US face in their ability to deliver services to their patients, as a result of state-level abortion legislation," she said. "It will also be helpful to know if or how these gaps are being addressed, whether partner organizations are addressing these gaps for their constituents, and how this may also impact genetic counselor services in reproductive care."

The deadline to submit proposals for the research funding is March 1. NSGC's research, quality, and outcomes committee will review proposals and expects to award the funding in July.

The research initiative sounds promising, Johnstonbaugh said. "It will continue to be increasingly important to have efforts like this ongoing as things continue to change and evolve," she said, adding, "those of us who are not living in restrictive states are not living the day to day of these impacts on the ground, so hearing from these voices will be crucial."