Batteries Not Included

We are learning to act on disease before it starts. Medicare will pay for the test, just not the person who explains it. And why this matters more than you would think.

Lauren Berkowitz · Sep 2, 2026

Six members of Congress signed on to a bill in six days. The bill, the Access to Genetic Counselor Services Act, adds genetic counselors to the list of providers Medicare pays, and it has been introduced in five Congresses since 2018 without a hearing or a vote. That brings it to 30 names, against the 290 that would earn the bill a guaranteed floor vote. Noteworthy to me because of the work I am doing building a knowledge graph of the hereditary cancer ecosystem, rather than indicative of a mass movement. And what Medicare does shapes the rest of the healthcare industry more than I understood when I started. Also noteworthy is that one of the six is Debbie Wasserman Schultz, the Democratic congresswoman from Florida, who found a lump six weeks after a clean mammogram at 41, and learned after the breast cancer diagnosis that she has a BRCA2 mutation. Skin in the game, or in this case skin and DNA in the game, and sometimes that is the most important driver of all.

So Medicare pays for the test and not for the explaining

Medicare has paid for the inherited genetic test itself since January 2020. You can get the test, you cannot get the hour with the person who tells you what it means, and closing that gap takes an act of Congress. It gets stranger when you find out there are more than 7,000 certified genetic counselors in the US, more than the rest of the world combined, so we have already made the investment and we just are not getting the return on it.

Medicare pays only the provider categories written into its statute. Nurse practitioners, physician assistants and clinical social workers each took a separate act of Congress to add. Genetic counselors never got that act, so a counselor's visit is billed through a supervising physician or not billed at all. The list reaches well past Medicare, because private insurers key off what Medicare pays, letting the government do the analysis and the heavy lifting and then following along, so a job Medicare has never priced has no number for anyone in the industry to negotiate from.

The bill follows the same pattern as the ones before it, paying counselors at 85 percent of the physician rate starting in January 2027, which is a single line added to a list. The National Society of Genetic Counselors formed a committee in 2021 whose job is building cosponsors for the bill. More than 200 organizations have signed on in support, among them the American College of Medical Genetics and Genomics, the American Society of Human Genetics, the American Cancer Society Cancer Action Network and the National Organization for Rare Disorders. The NSGC board went to Capitol Hill in April to meet House and Senate offices. In eight years and five Congresses it has never reached a hearing, and its three recorded actions are an introduction and two referrals.

When trials don't fill

Genetic counselors mostly do not order the test. In most states their license lets them identify and coordinate testing rather than order it. What the counselor does is everything before the order: the family history, the risk assessment, choosing which panel to run, and the consent conversation. Most cancer centers send the referral to genetics first, which makes the counseling appointment the gate rather than the signature. Fewer counselors means a longer wait at that gate, fewer tests ordered, fewer people known to carry anything, and a trial that needs carriers can only enroll from the people somebody already found.

The Austrian Breast and Colorectal Cancer Study Group spent several years running BRCA-P, a trial testing denosumab, an osteoporosis drug already on pharmacy shelves, against placebo in healthy women who carry a BRCA1 mutation. It called for 2,918 participants. Enrollment closed at the end of 2024 with 364. An earlier prevention trial in BRCA carriers also failed to finish, and no source states why either one could not fill, though the documented problem sits further upstream, which is that most carriers are never identified in the first place.

In January, Nature Medicine published a vaccine trial in 45 people who carry Lynch syndrome, an inherited condition that raises colon cancer risk, and who did not have cancer. Every evaluable participant mounted an immune response, and at the final colonoscopy nobody had an advanced adenoma, the precancerous growth 4.65 percent of them started with. The trial measured immune response and growths rather than whether anyone avoided cancer, which is a real limit, but it is a credible sign that a person can be vaccinated against a cancer they do not have.

Nouscom, which makes the vaccine, has since received Fast Track designation from the FDA and says the program is headed for a registration-enabling trial. Longer follow-up data goes to ESMO in Madrid in October. Lynch syndrome affects about 1 in 300 people, and a registration trial needs them found, tested and enrolled before it can start.

Prevention trials have no tumor to test

Clinical trials mostly need no genetic test at all, running instead on diagnosis, stage and prior treatment. Among the ones that do use genetics, most read the tumor rather than the person, testing markers the cancer acquired, off a biopsy taken as part of ordinary workup on a patient the system has already found. A prevention trial has none of that, with no tumor to biopsy, no diagnosis, and no reason for a healthy carrier to be in a cancer center at all, which leaves an inherited test as the only route in. Two things decide whether that test ever happens: whether the person qualifies for one under the guidelines, and whether they can get the appointment.

Who qualifies for a test

Guidelines built on personal and family cancer history decide who gets offered a test at all. Geisinger, a health system in rural Pennsylvania, sequenced 50,726 volunteers without applying those guidelines first and found 267 people carrying a BRCA1 or BRCA2 variant, and among the previously untested carriers whose family histories could be fully documented, 44 of 89 would not have qualified for the test that found them. Geisinger is one health system and its participants volunteered, so the figure is a signal rather than a national rate, and no national rate exists.

What found me was a byproduct of an ancestry search rather than a clinical pathway, and that route is getting bigger, because consumer kits keep selling and the longevity and executive health programs now bundling whole genome sequencing on the way to precision medicine will keep handing people findings they were not looking for.

Who can get an appointment

No law requires a genetic counselor to be involved before a genetic test, but most cancer centers route the referral through genetics, and genetics means a wait. A genetic counselor is neither a doctor nor a therapist, though the job borrows from both: a two-year master's in genetics and counseling psychology, spent learning to read a family history, attach percentages to outcomes, and walk a person through surgery, screening and parenting decisions.

In a national study of women tested in 2014 and 2015, co-authored by FORCE, the hereditary cancer advocacy organization, 54.4 percent had their BRCA results in hand before surgery, and the rest either got the result after the operation or were not tested until it was over. Among the women who knew they carried a mutation going in, 32 of 37 chose a bilateral mastectomy, against 14 of 32 among those who found out afterward. Nobody has measured any of this nationally since 2019.

Where genetic counseling got its name

The reason a counselor stands in that position at all goes back to 1947, when a geneticist named Sheldon Reed took over an institute at the University of Minnesota endowed by Charles Fremont Dight, a physician who wrote the state's 1925 sterilization law and, in 1933, a letter to Hitler commending the German version. Reed wanted a name for telling a family their odds and letting the family decide, and rejected the sterilizers' term, genetic hygiene, in favor of genetic counseling, "a kind of genetic social work without eugenic connotations." He built the job to sit between a person and a decision, and eighty years later it sits between a person and a test.

Why you cannot just train more counselors

The obvious fix is more counselors, and both routes to that are blocked. Training more runs into the match, where applicants and programs rank each other and an algorithm assigns the seats, and this year 1,043 people applied to the 64 accredited programs and 687 got in. Asked what caps class size, program directors point to fieldwork capacity, meaning the rotation sites and supervisors every student needs, which they call a bottleneck to entering the profession, so the counselors available to supervise are what limits how many new counselors get trained.

Handing the work to software runs into the counselors themselves. In a preprint released this May, 40.7 percent of them said they were confident letting AI take a family history, and 2.5 percent said the same about delivering a result. What they objected to was not the software's grasp of genetics but its inability to tell whether the patient understood.

You can buy the test yourself

Counseling is the dominant route to an inherited test in US cancer centers, not the only one. On August 3, Human Longevity put its $599 whole genome on general sale, a saliva kit at home and an AI-read report for your own doctor, with no appointment included at that price, with a counselor or anyone else. You get a file. Letting surgeons order the test themselves took one Montreal hospital from 51 to 86 percent, and population screening is what found the carriers at Geisinger, and neither route needed a counseling appointment. Paying the counselors who already exist does nothing at all for the 44 of 89 who were never eligible in the first place.

The science has moved faster than the machinery for finding people to test it on. A vaccine showed promise in 45 people who did not have cancer. A prevention trial asked for 2,918 women and closed with 364.

This scenario oddly reminds me of two movie scenes. In Jaws, Chief Brody sees the shark for the first time and says "We're gonna need a bigger boat." In Jurassic World, it's one of Claire's nephew who says "We need more teeth", as the solution to stop the engineered dinosaur Indominus Rex.

We need more people identified and we need the infrastructure to find them.

Sources

In order of appearance: Bill history, cosponsors and actions, congress.gov H.R.6280, 119th Congress, cosponsor page read live 2 September 2026, led by Adrian Smith of Nebraska and Kathy Castor of Florida, introduced 21 November 2025, with the Senate companion S.3607, sponsored by John Barrasso of Wyoming with Peter Welch of Vermont, Shelley Moore Capito of West Virginia and Jacky Rosen of Nevada, introduced 8 January 2026 and referred to the Committee on Finance, and prior versions H.R.7083, H.R.3235, H.R.2144, S.1450, H.R.3876 and S.2323; the 85 percent rate and January 2027 start from the bill text; the 290 threshold, House Rule XV clause 7, the Consensus Calendar. Endorsing organizations and the Advocacy Coordinating Committee formed in 2021, NSGC advocacy pages, endorsement list read live 2 September 2026, NSGC's own count is more than 200 while NORD gives over 450; the April Capitol Hill visit, NSGC newsroom release, 27 April 2026. Wasserman Schultz, AACR Cancer Progress Report 2013 and a Marie Claire interview, two independent sources. Germline test coverage since 27 January 2020, CMS national coverage determination 90.2. About 7,000 US counselors of roughly 10,250 worldwide, Ormond et al., Genetics in Medicine Open, 2024. Medicare provider categories written into statute, MedPAC Payment Basics and 42 CFR 414. Private insurers pricing off Medicare, Clemens and Gottlieb, Journal of Political Economy, 2017. Counselor scope of practice and ordering authority by state, NSGC licensure materials. BRCA-P, sponsor page of the Austrian Breast and Colorectal Cancer Study Group, for the denosumab regimen, the 2,918 target and the 364 randomized before enrollment closed 31 December 2024; the earlier prevention trial that did not finish, PMID 36001346; no source states why either could not fill. Lynch syndrome vaccine, D'Alise, Willis, Vilar et al., Nature Medicine, 16 January 2026, with the NCI Division of Cancer Prevention and Nouscom with the NCI Division of Cancer Prevention and Nouscom; the 1 in 300 prevalence from the same paper; FDA Fast Track designation, the registration-enabling trial and the ESMO oral presentation scheduled 23 to 27 October 2026, Nouscom press releases, 20 July 2026, company statements rather than peer-reviewed results. Geisinger's 50,726 volunteers, 267 carriers and 44 of 89, Manickam et al., JAMA Network Open, September 2018. Results before surgery and the mastectomy comparison, the ABOARD study, Armstrong et al. with Friedman of FORCE, JCO Oncology Practice, February 2021, on women tested in 2014 and 2015; nothing national has measured testing rates since 2019, because these studies need years of follow-up. Two-year master's, Accreditation Council for Genetic Counseling standards. The 2026 match, National Matching Services; fieldwork capacity as a bottleneck, their phrase, Jirik et al., Journal of Genetic Counseling, February 2024. Dight, the 1925 Minnesota sterilization law and the 1933 letter to Hitler, MNopedia and the Minnesota Historical Society Dight Papers; Reed's phrase, Reed, Social Biology, 1974. Counselors on AI, medRxiv preprint posted 24 May 2026, not peer reviewed, measuring what counselors believe rather than what the software can do. The $599 whole genome, Human Longevity product pages and press release, 3 August 2026. Montreal surgeon-initiated testing, Piedimonte et al., International Journal of Gynecologic Cancer, 2020.