Editor's note: Views of genetic counselors quoted in this story do not reflect the positions of their employers.
NEW YORK – Members of the National Society of Genetic Counselors have grown frustrated with their professional organization's limited advocacy of reproductive rights issues and the lack of progress on a federal Medicare payment bill — and they are demanding the society change its political strategy and leadership.
For years, NSGC has focused on getting the Centers for Medicare & Medicaid Services to recognize genetic counselors as medical providers so they can be paid directly for their services and patients can better access genetics experts in their care. In the interest of advancing a bipartisan bill to achieve this, NSGC has largely stayed out of the political fray on abortion. But after the US Supreme Court decided in Dobbs v Jackson Women's Health Organization last year that women have no constitutional right to abortion and left it up to the states to regulate access, more than 600 people signed a petition advanced by 25 genetic counselors demanding that their professional society do more to support genetic counselors' role in facilitating patients' reproductive choices while also making better progress on the bill.
The petition signals a growing fissure between NSGC and some of its members about how the organization should advocate for the rapidly growing profession amid increasing demand for genomics expertise in healthcare and deepening political divisions in the US. The number of certified genetic counselors in the US have more than doubled in the last decade, currently numbering around 6,000. Thirty-five states have promulgated licensure laws, further establishing the profession's standards, up from one state in 2001. However, with 22,000 new genetic tests entering the market every year since 2015, and 167,000 commercialized tests as of 2020, there's a dearth of genetics experts to ensure patients are receiving the right tests and understanding the results.
NSGC's current leaders acknowledged that as an organization with limited resources, it has historically prioritized getting Medicare recognition given its importance to growing the profession but said the society has always encouraged genetic counselors to individually advocate for issues they're passionate about. They noted that since 2010, NSGC has had a statement supporting reproductive healthcare access, which members reaffirmed in 2014, and updated in 2022. And last year, NSGC joined two other leading genetics professional organizations, the American College of Medical Genetics and Genomics and the American Society of Human Genetics, in stating that the Dobbs decision "will swiftly limit access to safe reproductive healthcare in many states and will inevitably deny pregnant people and families the choices they should have, including abortion." More recently, NSGC said it has ramped up efforts to educate members on reproductive rights issues and better support prenatal genetic counselors in abortion-restricted states.
For many genetic counselors, however, NSGC's efforts fall short. Over the past decade, as legislative efforts to limit patients' reproductive healthcare decisions cropped up in several states, those that signed the petition and even those who didn't said the organization should have been more proactive in educating the public about how genetic counselors are champions of both disability and abortion rights and correcting the narrative advanced by anti-abortion politicians that when prenatal testing reveals a potential health issue with the fetus, healthcare providers typically tell patients to end the pregnancy. Even though several genetic counselors interviewed for this story said they urged NSGC leaders for years to do more than just issue statements on reproductive rights, the society thwarted members' efforts to do even that much.
There's been "a pattern of muzzling the organization on the issue of reproductive rights that has left us ill-prepared to deal with the current disastrous legal landscape, where genetic counselors are struggling without guidance or protection," said Laura Hercher, who teaches ethical, legal, and social issues to genetic counseling students at Sarah Lawrence College in New York. She didn't sign the petition because she wanted to remain unconflicted while reporting an article for Scientific American on the impact of Dobbs on genetic counselors, but she said the petition speaks to a lot of members' frustrations over NSGC's strategy.
The NSGC, since around 2007, has been raising awareness of the profession among legislators, gathering data on the value genetic counselors bring to the healthcare system, and building the case for Medicare recognition and direct reimbursement. In 2018, legislators introduced a bill for the first time. Since then, the bill has been reintroduced twice more, most recently in the last session, during which it was co-sponsored by seven senators and 69 representatives, 30 of whom were in committees with jurisdiction over the bill. But the bill has never been debated within a committee or come to a vote. NSGC is working on reintroducing it again in the current congressional session.
Misha Rashkin, a genetic counselor at the Stanford Cancer Center and one of the leading figures behind the petition, doesn't feel the bill's progress to date has been worth back-benching reproductive rights. "It's hard to look yourself in the mirror as an NSGC member at this point," Rashkin said. "What are my dues funding?"
"Clearly, just trying to fly under the radar to get our bill passed isn't working," said Jordan Brown, a genetic counselor at Ohio State University, who also signed the petition. She believes the profession must start acknowledging the history linking eugenics and abortion, while also illustrating that genetic counseling intersects with abortion and disability rights in advocating for patients' healthcare access. While on NSGC's public policy committee, she felt she spent a lot of time fighting with the organization's leadership on the need to be more proactive on such issues but achieved little success in these conversations. Burned out, Brown decided to step away from NSGC this year.
Time for an RFP?
Longstanding frustrations with NSGC's advocacy strategy boiled over last summer after the Dobbs decision and culminated in two dozen genetic counselors who have served on the organization's board, committees, and task forces going public with their concerns. In the DNA Exchange blog, the petitioners specified that they want NSGC to engage in a transparent, competitive bidding process by putting out a request for proposals (RFP) for lobbying firms every few years and prioritizing bids from those with experience getting mid-level providers CMS recognition and working on reproductive justice issues at the state and local level.
"This is a nonprofit organization that runs on dues, volunteers, and donations," Rashkin said. "It is deeply disrespectful to the sacrifice of every single person involved to neglect to do an RFP for 15 years."
In 2018, NSGC hired lobbying firm Capitol Counsel, which represents other healthcare providers, has experience in Medicare policy, and employs lobbyists who previously worked in the committees that have jurisdiction over the Medicare recognition bill. Capitol Counsel lobbyists work closely on advocacy strategy for the bill with NSGC's internal government relations team led by John Richardson, who is an employee of Smithbucklin — a firm that contracts with small to midsized trade groups, nonprofits, and associations that are volunteer-driven like NSGC, and provides them management services, such as executive leadership and administrative support. It's not uncommon for smaller associations to hire out management services, and Smithbucklin provides NSGC key staff including Meghan Carey, who has been executive director since 2008; Richardson, who has been NSGC's director of policy and government relations since 2006; and others involved in government relations, membership operations, education, and events.
Even though NSGC's advocacy strategy is ultimately set by a democratically elected board, several petitioners said the leadership has allowed Smithbucklin government relations staff too much influence, down to how NSGC's statements should be worded and when they should be released.
When asked to comment on the petition, Smithbucklin deferred to Richardson, who maintained that he provides NSGC strategic advice on public policy matters based on the objectives set by the board, and throughout his time at the organization, board members have prioritized getting CMS recognition for genetic counselors. As the board has updated its strategy to respond to the changing political landscape post-Dobbs, he said he has continued to provide his government relations perspective.
"The notion that I make decisions for NSGC is completely inaccurate and not only undermines the governance of the organization but also undermines the important role and input of every board member I have served over the last 15 years," Richardson said. "I have never set the agenda and never will — I pursue the agenda the board directs me to."
Even though the board has recently said the organization is updating its reproductive rights advocacy strategy, dissatisfaction has been brewing for some time among genetic counselors that NSGC has not adequately represented the profession on this topic. "Every consultant we've ever talked to, officially and unofficially … all of them have told NSGC it's better to stay out of politics if you want to get [the Medicare bill] through Congress," said William Faucett, who served on NSGC's board in the 1990s and more recently on the public policy committee and is currently a professor of genetics at Geisinger Commonwealth School of Medicine.
This has always been a source of tension within a profession where the vast majority support reproductive freedom, reflected Faucett. He didn't sign the petition because he felt it put the board in an impossible position by asking NSGC to be vocal on reproductive justice while also advancing the Medicare recognition bill. "The two don't go together," he said, adding he would have signed the petition if it asked the board to shift its strategy to focus on reproductive rights advocacy.
More than 90 percent of NSGC members are women, and most people interviewed for this story said the profession is overwhelmingly pro-choice; and those who aren't, tend to avoid the prenatal specialty since the code of ethics for the profession dictates that regardless of their personal views, genetic counselors must ensure patients are making informed healthcare decisions. While NSGC hasn't surveyed members on whether they support reproductive healthcare freedom, the organization said that every time its statement on this topic has come up for review and revision, members' comments reveal that counselors hold a range of views, while others pointed out that most members support the statement.
Moreover, a survey conducted by Hannah Johnstonbaugh for her master's degree in genetic counseling at the University of Maryland and presented at NSGC's annual meeting last year suggested that counselors want the organization to get more active in reproductive rights advocacy. In the 2021 survey of 192 NSGC and 60 Society of Family Planning members, 39 percent of genetic counselors said they were satisfied or highly satisfied with their society's position regarding reproductive justice matters compared to 88 percent of family planning professionals. The difference remained statistically significant when Johnstonbaugh compared responses only from prenatal genetic counselors against family planning providers.
If the petition wasn't clear enough, then this survey should at least convey to NSGC that its members haven't felt represented on this issue of critical importance to them, said Rashkin. "Sacrificing our commitment to patient autonomy and agency is a grave ethical error for an industry that prioritizes these values. Sticking with the status quo is a failure of the [NSGC] leadership's ethical and fiduciary responsibility," the genetic counselors leading the petition wrote in the DNA Exchange blog, adding that "Smithbucklin has not been held accountable for their lack of progress" on the Medicare recognition bill.
In a nine-page response to the petition, the NSGC board explained the organization's historic focus on CMS recognition, praised Capitol Counsel's and Richardson's political experience, and highlighted the progress on the bill, state licensing, and more recent efforts to bolster reproductive rights advocacy — but ultimately, it declined to meet petitioners' demand to issue an RFP for a new lobbying firm, at least for the time being. The board noted that two years ago, NSGC vetted proposals from a few firms, including Capitol Counsel, through an RFP-like process, but since the other companies didn't suggest substantive strategic changes and were more costly and less experienced than Capitol Counsel, NSGC decided to stick with the firm it had.
In an interview last November, Heather Zierhut, who was NSGC president at the time and directs the genetic counseling program at the University of Minnesota, said that after considering what new strategies other lobbying groups might bring, and the fact that it was in the middle of a congressional session where "we had so much momentum and things were going so well" on the Medicare recognition bill, the board decided not to put out an RFP. "We're not opposed to doing an RFP," she said. NSGC has told petitioners that it is tracking the progress of federal advocacy efforts against established metrics and will regularly review the need for an RFP.
Although the NSGC board responded to petitioners' specific demand to do an RFP for lobbying firms, according to Rashkin, the petition is a call for NSGC to "change its entire political operation including Smithbucklin's political staff and Capitol Counsel." Several petitioners said they weren't aware that the board had vetted other lobbying firms a few years ago. This points to the lack of transparency at NSGC, they said, and the need to put out a call for bids and proposals from vendors through a more competitive, formalized, and ideally public process like an RFP.
Before she joined the petition, Heather Shappell, an independent consultant to businesses on increasing access to genomic technologies, said she asked NSGC's leadership repeatedly to do an RFP for lobbying firms and government relations services, especially while she was on the board as a director-at-large from 2019 to 2020. "They were clearly resistant to doing an RFP but provided no clear reason why," she said, noting it is standard for organizations to do an RFP every few years even if they're happy with vendors. "At the end of the day, the worst or best possible scenario is that we get proposals from other organizations on what they would do and what they would charge."
In 2020, the most recent year NSGC's tax documents are available in ProPublica's Nonprofit Explorer, the organization paid Smithbucklin nearly $2 million for management services and Capitol Counsel $120,000 for legal services and spent more than $380,000 on lobbying. According to the board, its costs related to Capitol Counsel haven't increased since contracting the firm in 2018, but as the organization has added members, expanded programs, and ramped up state licensure efforts and lobbying for the federal bill, its overall lobbying and management services expenditures have also increased.
"We can't do this alone," said Zierhut, describing a collaborative relationship where the democratically elected board sets the advocacy priorities but relies on members, contract lobbyists, and Smithbucklin staff to execute its plans. "This is a volunteer-based organization. We have to work with [Smithbucklin] staff to help us move our initiatives forward or we would not have capacity to do some of that work."
Several genetic counselors said, however, that the professional society's organizational structure may be contributing to this tension between the board and members who feel the NSGC's advocacy strategy needs to change. Genetic counselors on the board serve for a few years, but the operational continuity is provided by longtime Smithbucklin staff.
Rashkin pointed out that elected board members are not only unpaid, but may also lack political experience, and they rely on Smithbucklin staff to bring them up to speed on how things are done at the organization. Added to this, "genetic counselors often don't like conflict," said Rashkin, who was on NSGC's public policy committee for seven years, including as chair in 2018. In committee meetings, when he or others argued that NSGC needed to represent reproductive rights in genetic counseling circles, Richardson would "shut it down."
Faucett, who chaired the public policy committee in 2016, said he and Richardson disagreed on advocacy strategy sometimes, but he felt the government relations director was just doing his job. In written responses to questions for this article, Richardson repeatedly asserted he doesn't make decisions on NSGC's statements or policies and that his job is to provide strategic advice. "I am a strong and passionate advocate for genetic counselors," he said, citing in particular his work to advance genetic counseling state licensure laws. However, he declined to address genetic counselors' specific recollections of their interactions with him on committee matters, stating that all participants are bound by confidentiality.
Because of a confidentiality agreement Brown signed as chair of the public policy committee in 2022, she said she only spoke about her experiences on the committee prior to that for this article. Shappell, Rashkin, and Hercher said they haven't signed a confidentiality agreement with NSGC.
A bill's progress
NSGC leaders interviewed for this article felt the petition shows a need to better educate members about complex legislative processes and the work necessary to get a bill passed through Congress.
Joy Larsen Haidle, a genetic counselor at North Memorial Health Cancer Center in Minnesota and 2015 NSGC president, recalled when in 2007 the organization first started raising awareness of the genetic counseling profession on Capitol Hill. It quickly became clear that genetic counselors would have "to prove that we could save costs and reduce harms to patients," said Larsen Haidle, who felt the petitioners failed to recognize all the effort the organization, government relations staff, and volunteers put in gathering this data and building the case for Medicare recognition before a bill could even be written.
There is little disagreement that passing the CMS recognition bill is important for increasing patients' access to genetic counselors, not only because it would allow counselors to directly bill Medicare for their services, but it would also let more counselors practice independently without having to be supervised by a physician. "If we have a limited ability to bring in reimbursement for the services that we're providing, it falls on to the hospitals to pick up that cost," Larsen Haidle said. "It makes it very difficult for hospitals to hire genetic counselors."
However, many genetic counselors would also say that they wouldn't be able to do their jobs without the freedom to openly discuss with patients what genetic test results mean for them or their fetus and the full range of care options available to them based on those results. In their response to petitioners, NSGC board members acknowledged "the need to … re-evaluate the allocation of … available resources and political capital across different advocacy priorities" but also defended that they are fulfilling the organization's mandate to develop and grow the profession.
With regard to the Medicare recognition bill, in addition to gaining 76 cosponsors in the House and Senate in the last congressional session, NSGC highlighted that it had built a coalition of 420 supporting organizations and sent thousands of letters to the majority of legislators. Rashkin questioned whether 76 cosponsors out of 535 legislators is sufficient progress. Others wondered why NSGC is highlighting volunteers' efforts like letter-writing campaigns and not sharing more about what government relations staff and lobbyists are specifically doing to visit legislators on the Hill to keep their attention on the bill.
Zierhut explained that a bill's movement through Congress is influenced by a lot of factors that neither the NSGC nor its lobbyists can control, so the metrics the organization tracks are those that it has some influence over, like getting the bill introduced in the House and Senate, getting more cosponsors in committees of jurisdiction, and tracking volunteers' efforts. Moreover, NSGC works with government relations staff in a lot of different capacities, she said, adding, "I don't think you can separate some of these metrics for one individual person when this is a large strategic effort."
Moreover, bills "aren't things where you introduce them and they're going to pass overnight," said NSGC President-elect Colleen Campbell, director of genetic counseling operations at the University of Iowa Hospitals and Clinics. She cited the example of physician assistants, who became Medicare-covered providers in 1997, but didn't achieve direct payment through a bill similar to the one NSGC is trying to pass until 2020. Campbell also noted it took over a decade to pass the Genetic Information Nondiscrimination Act, the law that restricts health insurance and employment discrimination based on people's genetic information.
GINA was introduced in 1995 and achieved near-unanimous passage in 2008. During those years, advocates worked relentlessly for its passage, recalled Sharon Terry, CEO of Genetic Alliance, a nonprofit that advocates for individuals and families with genetic conditions. "We were on the Hill every day for 12-and-a-half years," said Terry, who created a coalition of 500 organizations backing the bill.
Although lobbyists warned Terry and other advocates to steer clear of "hot rail" issues like abortion or how the bill might impact insurance companies' profits, advocates remained steadfast, Terry said, that "if we showed what this [bill] means to people, all that noise wouldn't matter."
Terry recalled that years ago she offered NSGC the chance to partner with Genetic Alliance and use the "GINA model" to sway legislators on the Medicare recognition bill, state by state, where a Genetic Alliance advocate, a genetic counselor, a doctor, and a patient would visit offices together on the Hill. But, she said NSGC never took her up on the offer.
Meanwhile, at the end of 2020, the twice-introduced physician assistants' Medicare payment bill passed as part of the Coronavirus Relief & Omnibus Agreement, but NSGC's bill did not. When asked why not, Richardson noted that with 150,000 physician assistants in the country, the group wields more political power than genetic counselors, and since the bill allows them to be paid at a 15 percent discount to doctors, it enabled the government to tout savings and expanded access to frontline healthcare workers during the COVID-19 pandemic.
"With thousands of bills introduced every year and the very few that actually become law, it should come as no surprise that we are still working to enact this bill," Richardson said. He acknowledged that the pandemic set NSGC's federal legislative efforts back two years but maintained that the organization built "solid momentum" in 2022 with the help of Capitol Counsel's "relationships on both sides of the aisle" and 3,000 genetic counselors who sent letters to legislators. Further, it's "not happenstance," he said, that Sen. John Barrasso, R-Wyo., a physician who backed the physician assistants' bill, had also sponsored the genetic counselors' bill.
Another complicating factor may be that the American College of Medical Genetics and Genomics, which includes as members largely M.D./Ph.D. medical geneticists but also genetic counselors, is not among the healthcare industry, research, provider, and advocacy organizations supporting NSGC's bid for Medicare recognition. ACMG and NSGC have yet to find common ground over bill language stipulating genetic counselors' scope of practice. ACMG has said it will support the bill if it is amended to state that genetic counselors will be reimbursed for services provided under collaborative agreements with doctors, but NSGC hasn't agreed to this. Terry believes this discord may be a problem for NSGC's bill.
NSGC said it is currently working on reintroducing the bill in coming weeks with a new Republican sponsor. However, having missed the chance to be in the omnibus package last year, Hercher isn't optimistic about the bill's chances since Republicans have majority control of the House and seem adamant on not giving Democrats any legislative wins.
In the crosshairs of the abortion debate
When it comes to reproductive rights issues, Richardson recounted NSGC's experiences trying to negotiate with different groups over "conscience clauses" in state genetic counseling licensure bills. After Oklahoma passed a licensure law in 2006 with such a clause, allowing genetic counselors morally opposed to abortion to not discuss it with patients and the state board of health to promulgate alternative training programs, it became a model in other states. NSGC decided then that it needed to lead local genetic counselors' licensure efforts, which Richardson has been extensively involved in.
In 2010, when Right to Life in Rhode Island tried to include similar language in a licensure bill, local counselors and NSGC negotiated with the anti-abortion group for two years but abandoned the effort when they couldn't strike an agreement. Republican Gov. Donald Carcieri vetoed the 2010 bill out of concern that it would deny genetic counselors a license who "simply … do not recognize abortion as an appropriate 'treatment' option." NSGC and local counselors tried again in 2021 to pass a licensure bill without a conscience clause and it became law last year.
In 2014, when Virginia legislators were considering a genetic counseling licensure bill with a conscience clause, Richardson said that he and counselors in the state worked with legislators, the governor's office, and various groups to include language that would require genetic counselors morally opposed to abortion to inform patients and give them information on finding another counselor. This compromise was acceptable to NSGC and counselors in Virginia, Richardson said, and Gov. Terry McAuliffe, a Democrat, signed the bill into law.
Even with this compromise, pro-choice groups did not favor the conscience clause, and the American Civil Liberties Union lauded the repeal of this clause in 2021. This history, nonetheless, offers some insight into why NSGC hasn't been loud in reproductive rights debates while trying to advance licensure laws in conservative states like Iowa, where the governor has been trying to enforce a 2018 law banning abortion at six weeks.
Several genetic counselors said they weren't aware of NSGC's efforts to block conscience clauses in state licensure efforts. According to a survey published in 2021, most genetic counselors are unaware that these clauses are part of some state laws. This history still doesn't justify NSGC's lack of action on reproductive rights issues, several petitioners said.
Brown recalled that a lobbyist from Capitol Counsel, which also works with Planned Parenthood, told NSGC's public policy committee members during a presentation once that talking about abortion can put a "target on your back" in political circles. "Then, maybe genetic counselors need to put a target on our backs," Brown recalled replying, to which the lobbyist reportedly said that's a decision NSGC would have to make. Brown interpreted this to mean not that NSGC can't talk about abortion, but that it would need to consider the pros and cons of becoming politically active on reproductive rights. Until this presentation, however, the impression she had from government relations staff is that NSGC can't talk about abortion, and if it does it will jeopardize the Medicare recognition bill's prospects. Capitol Counsel didn't respond to a request for a statement for this article by press time.
Owning genetic counseling's relationship to abortion is going to be hard, Brown acknowledged, adding, "It is putting a target on our backs, but we owe that to our patients, our colleagues, and ourselves."
"Genetic counselors are politically savvy enough to know that there will be costs and benefits to prioritizing reproductive freedom, but the struggle is here, and there's no avoiding it," Rashkin said. "We need new [government relations] staff who will wholeheartedly join us in that struggle."
In Hercher's view, NSGC should have been laying the groundwork for this advocacy over the past decade but failed to heed the warning signs that genetic counselors would eventually find themselves in the crosshairs of the abortion debate. She has long been concerned that anti-abortion politicians would eventually try to limit prenatal testing and care access and impede genetic counselors' communication with patients. When Hercher wrote to the NSGC leadership in 2012 about her concerns, she recalled that they responded that the organization "doesn't see this as a big issue and doesn't want to be public in anything that has to do with abortion."
As anti-choice rhetoric has continued to intensify in recent years, some genetic counselors said they tried again and again to update the 2014 statement on reproductive healthcare access but said that they were repeatedly stymied by the organization. The public policy committee (recently renamed the position statement committee) examines NSGC's statements and decides if they need revision, and in 2016, Hercher chaired a task force charged with drafting updated language with feedback from NSGC members and the board. In 2017, before the statement could be finalized and adopted, "John Richardson popped up at the very last moment," according to Hercher, and said it was a "particularly bad time" to release the statement, and the NSGC leadership listened to him.
While neither Richardson nor the board objected to the content of the statement, the idea was that it was a crucial moment for the bill, Hercher said, but the last-minute cancellation of the statement, which had taken months to develop, felt "dismissive, rude, and disrespectful of volunteers' time and effort."
Richardson said in the past Smithbucklin staff have acted as staff liaisons delivering the board's decisions to committees but now a board member directly delivers them. During this incident, he wasn't a staff liaison but was involved in discussions with the board about the position statement. "There shouldn't have been confusion [among committee members] as it was clear that the board was deciding and not staff when decisions were communicated, but I'll give them the benefit of the doubt," he said.
Brown recounted another effort to update the reproductive healthcare access statement in 2020 and create reproductive rights-related resources in 2021 that were scuttled by the board. By the time an updated statement on reproductive healthcare access finally passed through the board in 2022, many NSGC members felt the society had dropped the ball, and that by putting out a statement now, "we were just covering our asses," said Brown.
Richardson said he understood volunteers' frustration when a project they've worked on doesn't come to fruition, adding, "The board and staff try to mitigate these less-than-ideal outcomes as best as possible because we value volunteers' time."
Meanwhile, NSGC's leaders have assured that the organization has been working to bolster its reproductive rights advocacy in light of Dobbs. For example, NSGC convened a task force on reproductive freedom in May 2021, which later that year was instrumental in quickly crafting a statement opposing Texas' ban on abortion upon detection of a fetal heartbeat. NSGC has restructured this task force into a longstanding workgroup that is collaborating with other committees to gather data on how state laws are impacting genetic counselors and evaluating opportunities to expand advocacy efforts in collaboration with other state and national organizations.
Despite these efforts, Hercher believes NSGC is still underestimating the threat that abortion restrictions pose to genetic counselors. "I do not believe that NSGC can stop abortion-restrictive legislation … [but] we need to be proactive and think about what we can do to blunt the impact of potential legislation on our patients and our practitioners," she said.
After Dobbs, a patchwork of state laws has emerged with 14 states outlawing most abortions as of late-April, and as of March six states prohibiting abortions when the fetus might have a genomic abnormality. While such laws are already making it harder for genetic counselors to discuss with pregnant women their full range of medical options, Hercher predicts that the next iteration of laws will more directly target genetic counselors' speech. For example, a South Carolina bill last year included language that would impose felony charges on providers if they discussed abortion services or even referred pregnant women to a website with this information.
NSGC could join lawsuits and challenge vague language in state laws that make it difficult for providers to determine when a fetal genetic abnormality is considered lethal and a legal abortion can be performed, Hercher said. NSGC can partner with other coalitions to explore how to challenge prohibitions on what genetic counselors can say, if such restrictions are passed, and start drafting materials highlighting "the value of [prenatal] testing for people who do not terminate" pregnancies, she added.
According to board members, NSGC's newly formed reproductive freedom workgroup is actively considering how to be a "nimble and responsive organization" and respond to opportunities to educate and correct misinformation about the role of genetic counselors.
'How should we move forward?'
Petitioners interviewed for this story felt that the board's nine-page response to their request for an RFP was just a long-winded way of dismissing members' concerns by making it seem like they don't understand politics or the NSGC's governance structure. "They seem to be saying, 'You don't have the whole picture,' but the people who advanced that petition had the whole picture," said Brown, pointing out that the 25 genetic counselors leading the petition have seen how decisions get made within the organization during their time on the board, the public policy committee, and reproductive rights task force.
Meanwhile, NSGC President-elect Campbell said the board is exploring ways to improve communication with members. NSGC sends out monthly email updates, but beyond that, it has on-demand webinars on policy matters and the lobbying process and presents on advocacy efforts to state chapters and at genetic counseling meetings, including at its own annual meeting last fall.
Petitioners reminded though that their main ask was to do an RFP to ensure NSGC had the best political representation and was using its resources effectively in support of growing the profession in the current political climate. Genetic counseling programs are graduating around 500 new counselors a year, and NSGC estimates there will be more than 10,000 genetic counselors by 2030.
Amy Miller, who is currently president of the nonprofit PhRMA Foundation, worked occasionally with NSGC on legislative issues of mutual interest while at the Personalized Medicine Coalition from 2007 to 2016. With a strong board and nearly $4 million in revenue and $246,796 in net income reported in 2020, "maybe a management company isn't right for [NSGC] any longer, and they have the resources to hire an entire staff, an executive director, and a lobbyist," said Miller, who expanded PMC's budget during her tenure.
Geisinger's Faucett, who has been engaged with NSGC throughout his decades-long career and is now semi-retired, also wondered whether it might be time to start paying NSGC board members. "Fifteen years ago, we made a decision to hire an organization and do all those administrative things that we didn't feel comfortable paying our members to do," he reflected. "Is it time for that to change?"
NSGC said its board is continuously assessing the organization's resources, financials, and strategic needs including alternative staffing models, particularly during times of growth. "Outside association management companies provide unique skills and talents in their staff partners, which may not otherwise be represented in a volunteer membership, and this also is part of the consideration," NSGC said.
Faucett suspects that most of his peers never believed that women in the US would lose the constitutional right to abortion. "I always said, 'We'd have to lose it before we really start fighting for it.' Now we've started fighting," he said. "And the question I would ask NSGC members and the board is, 'Now that we're in a different place, how should we move forward?'"
An army of advocates had to "wear down all the opposition" to GINA for its passage in 2008, recalled Genetic Alliance's Terry, but she acknowledged it was a different time politically, when Democrats controlled both chambers of Congress. Advocating for both reproductive freedom and the Medicare payment bill "is a fine needle to thread" for NSGC, but Terry feels it can be done. She always felt that the genetic counseling community was strong enough to lead their professional organization without a management services firm and said that she even told NSGC leaders this 15 years ago. But now that so many members are asking leaders to do an RFP, "in my not so humble opinion, NSGC needs to listen to the best and brightest counselors and stick their neck out for the people who need them so much."