A Guest Post by Misha Rashkin et al
The Supreme Court’s recent decision to overturn Roe v. Wade is an historic event, and in many ways genetic counselors are in the eye of the storm. The National Society of Genetic Counselors (NSGC) has historically remained silent on the issue of reproductive rights, citing Medicare recognition as a bipartisan issue that supersedes patients’ reproductive freedom. Though the threat of losing Roe has been clear since Brett Kavanaugh joined the Supreme Court, and all but inevitable after Justice Coney Barrett took the oath, NSGC leadership has continued to focus solely on Medicare reimbursement. After more than a decade of following this strategy, NSGC is nowhere near getting our bill passed, and now patients are losing fundamental rights. It’s time for change.
What is Next for Genetic Counselors?
- Going forward, there will be laws proposed in many states that could regulate what genetic counselors can document or say to their patients.
- To enact change, NSGC leadership will need to get involved in many legislative, legal, and electoral efforts.
- Electoral efforts will need to focus on local elected officials like District Attorneys offices, ballot measures, and state constitutional amendments.
Bottom line: It is not acceptable for NSGCs political operation to remain silent on reproductive choice. We must act on issues that impact our professional lives and the wellbeing of our patients. To remain silent is to capitulate.
What about our bill to be recognized by Medicare?
- Based on public records, NSGCs efforts to have Congress recognize genetic counselors as Medicare providers has been ongoing since 2007, longer than many counselors’ careers.
- Our bill has been introduced three times as HR 7083 in 2018, HR 3235 in 2019, and HR 2144 in 2021, and has yet to be considered by a single committee in Congress.
- While progress has been minimal, costs have ballooned 450% over 10 years, from $80,000 per year to $360,000 per year!
Bottom line: 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 leadership’s ethical and fiduciary responsibility. Board members are required to accept their fiduciary responsibility for NSGC the same as they would for their own personal finances.
What Can NSGC Do To Repair the Damage?
- The NSGC Board should put out a Request For Proposals (RFP) requesting bids from new lobbying firms every few years, beginning now. This is standard practice for nonprofit organizations. Smith Bucklin has not been held accountable for their lack of progress.
- RFPs should include lobbyists who have worked to get mid-level providers recognition.
- This process should be transparent and prioritize bids from political operatives who have:
- Experience working with our targeted committees (Energy & Commerce, and Ways & Means in the US House) to move our legislation forward.
- Experience working on reproductive freedom at the state and federal level.
Bottom Line: The Board should create a process where an RFP is put out at some regular cadence, such as every three years. It’s time to hold our Director of Government Relations and lobbyists accountable. If you agree, please sign this petition to register your support for accountability, transparency and change.
[alphabetical order]
Barbara Biesecker, PhD, MS, CGC
1989-1990 NSGC President
Jordan Brown MA, MS, CGC
2022 Chair, NSGC Public Policy Committee
Member, NSGC Reproductive Freedom, Access, and Justice Task Force
Founding Member, Genuine Collective
Elizabeth Fieg, MS, CGC
2020-2022, Public Policy Committee Member
Michelle Fox, MS, CGC
2020-2021, NSGC Director at Large
2008 Chair, Jane Engelberg Memorial Fellowship
Shreshtha Garg, MS, CGC
2020-2021 Chair, Equity and Inclusion Implementation Committee
Carrie Haverty, MS, CGC
2022 Chair, NSGC Membership Committee
Brianne Kirkpatrick, MS, CGC
204-2017, NSGC Public Policy Committee Member
Shelby Koenig, MS, CGC
Member, NSGC Reproductive Freedom, Access, and Justice Task Force
Megan Mckenna, MS, CGC
NSGC Member since 2020
Kristen Miller, MGC, CGC
2022 Senior Co-Chair, NSGC Prenatal SIG
Ana Morales, MS, CGC
2016-2020, ABGC Board of Directors (President, 2019)
2022, NSGC Expert Media Panel
2022, NSGC Practice Guidelines Committee Member
Shivani Nazareth, MS, CGC
2020-2021, NSGC Director at Large
2021-2022, NSGC Reproductive Freedom, Access and Justice Task Force Member
2013-2016, Public Policy Committee Member
Kate Partynski Emery, MS, CGC
NSGC Member Since 2015
Aarti Ramdaney, MS, CGC
2019-2021, NSGC Prenatal SIG Co-Chair
Misha Rashkin, MS, CGC
2018 Chair, NSGC Public Policy Committee
Hillary Rieger, MA, MS, CGC
NSGC JEDI Task Force, 2021-22
Sally A. Rodríguez, ScM, CGC
2021-2023, NSGC Membership Committee Member
2021-2023, NSGC Justice, Equity, Diversity, & Inclusion (J.E.D.I.) Committee Member
Katie Sagaser, MS, LCGC
2020-2022 NSGC Public Policy Committee Member
2019-2020 NSGC Prenatal SIG Co-Chair
Founding Member, GENUINE Collective
Kendra Schaa, ScM, CGC
2020-2021, Chair, NSGC Access & Service Delivery Committee
2017-2020, Member, NSGC Access & Service Delivery Committee
Heather Shappell, MS, CGC
2020-2021, NSGC Director at Large
Ashley Svenson, MS, CGC
2021-2022, NSGC Reproductive Freedom, Access, and Justice Task Force Member
Elizabeth Varga, MS, CGC
2018-2019 NSGC Director at Large
2016-2017 Co-chair, Pediatric Subcommittee, Cancer SIG
2014 Chair, Nominating Committee, American Board of Genetic Counseling
Chelsea Wagner, MS, CGC
2022-Present, Prenatal SIG Co-Chair
2022-Present, NSGC Abstract Review Committee
2019-2021, NSGC Marketing and Communications Working Group
2017-2020, NSGC Membership Committee
Kate L Wilson, MS CGC
2014 Chair, NSGC Access and Service Delivery Committee
2018 Chair, NSGC Education Committee
2012 Chair, NSGC Prenatal SIG
2017 Chair, NSGC Laboratory/Industry SIG
Beth Wood Denne, MS, CGC
2019 NSGC Cares Task Force
2011 Chair, Annual Education Conference
2013-2016, ABGC Board of Directors (President, 2016)
The DNA Exchange 
I whole heartedly agree! Thanks for raising this.
I completely agree with this – and as someone who has previously been engaged in the Medicare discussion, I have felt the need to pull back on those efforts and focus on reproductive justice. I am glad to see others doing the same.
Excellent article. Reproductive freedom should be NSGCs top priority. An RFP for a new lobbying agency is needed. What we have been doing has not worked!!!
Thank you for this bold and necessary statement. I wholeheartedly agree!
I fully support this important statement and have signed the petition.
Speaking of holding our lobbyists accountable, it is worth noting John Richardson’s: https://www.opensecrets.org/federal-lobbying/lobbyists/contributions?cycle=2022&id=Y0000024393L
Megan, do we know if those are personal donations or if they are made on our behalf to get favor for the bill?
Please forgive my lack of tact if that is evident, I don’t know how else to word that…
my understanding is they are personal donations.
Shannon, Open Secrets shows personal contributions. So that is his money. However, in. recent webinar, the NSGC made it clear that the NSGC PAC money goes to supporters on both sides of the aisle, including politicians who oppose abortion rights. I think that this should be made clear to all potential NSGC PAC donors, since I know many members would not want their money supporting anti-abortion forces.
While I agree completely with the premise of the article – reproductive rights should have equal or greater lobbying and monetary focus than Medicare reimbursement, the only call to action I see is for new lobbying structure for Medicare reimbursement. What should/could the the call to action for NSGC to support local, state and national efforts on reproductive rights?