The Hidden Costs of “Free” Genetic Counseling

A Guest Post by Eleanor Griffith, MS, CGC

Eleanor is the founder of Grey Genetics, a telehealth genetic counseling and consulting company.  Find Eleanor on twitter @elo81.


A lot of genetic testing companies are now offering genetic counseling along with genetic testing. That’s great, right? Great to see genetic testing companies hiring genetic counselors. Great for patients because it expands access to genetic counseling services to patients who wouldn’t otherwise receive genetic counseling.

Or actually, maybe not so great. Concerns related to conflicts of interest have been discussed on the DNA Exchange and elsewhere and are worth discussing further and at length. For starters, see here, here, and here.

But my gripe is that when a lab offers “free” genetic counselingit’s not really free. The cost is just hidden, bundled into the cost of the test. Hiding the true cost of genetic counseling in turn diminishes the perceived value of genetic counseling services.

Genetic counselors providing “free” genetic counseling get paid for their work. And they should. But the amount that it actually costs to provide genetic counseling vs. the amount that it costs to run a genetic test is not transparent—not to the patient, not to the physician, and not to the insurance company—which may or may not cover “genetic counseling.” Or may or may not realize that they do, in fact, cover the cost of some sort of genetic counseling(-ish) services by covering the cost of the test.

From a business perspective, for genetic testing labs, “free genetic counseling” is a no-brainer. It’s a big selling point and increases the odds that a healthcare provider will keep sending tests to the laboratory that is able to meet the very real counseling needs of their practice. As long as laws and regulations allow it, I don’t see this changing.

If the recognized product is the genetic test, and the main (or only) source of revenue for genetic testing labs is insurance reimbursement or out-of-pocket payments from patients, then the salaries of genetic counselors working for genetic testing laboratories are basically being paid by insurers + patients. If you follow my logic, this means that insurers will cover and patients do in fact pay for the (hidden) cost of lab-based genetic counseling, bundled into the cost of genetic testing. But insurers often don’t cover the cost of independent genetic counseling. Conflict of interest aside, this strikes me as ridiculous.

Away from the morass of insurance, patients and consumers of healthcare are being trained to see price tags attached to direct-to-consumer genetic testing products of dubious value, while genetic counseling is “free with purchase!” Even for clinical genetic tests ordered through physicians, self-pay prices are becoming more accessible. The logic, of course, is that labs will have a high enough volume of tests to scale and still make as much or more of a profit from testing…. Genetic counseling, however, cannot scale in the same way. This is why widgets get cheaper and cheaper while the cost of most professional services that require advanced degrees and involve working with clients one-on-one—lawyers, doctors, psychologists, financial consultants—remains relatively high.

While building up my private practice, I work part-time for an agency offering “free” genetic counseling to patients who respond to a quiz on facebook. I love it and I hate it.

I love it because I speak with high-risk patients who have never been referred to genetic counseling in a traditional way—many of whom have never heard of the BRCA genes. Patients who are interested in going forward with testing receive a copy of my consult note (yep, and a test kit) to take to their healthcare provider. Those who decline testing still receive a consult note with a copy of their family history and are encouraged to share it with their healthcare provider. Their healthcare provider has the option of including my name on the test requisition form so that I can receive and review results with their patient. Initially, I’m scheduled for an hour with each patient. If the patient needs more time to gather family history or to speak with someone in the family who would be a more appropriate candidate for testing—no problem, I just schedule her for a second call. I’m connecting with patients who would otherwise never have known of the option of genetic testing, would never have guessed that their insurance would cover the cost of testing for them, and had no idea of the impact it could have on their medical management and the value it could provide to their family members.

I hate it because the agency of course has a relationship with a specific laboratory. That laboratory happens to be the laboratory that I would recommend above others for hereditary cancer testing. This makes me feel good about the quality of testing that patients actually end up having—but also means that my professed recommendation should be looked upon with skepticism. Although the modest amount I’m paid is not affected by whether or not a patient goes ahead with genetic testing, and although I’m not privy to the details of the arrangement  between the agency I work for and the genetic testing laboratory—in reality, I’m obviously still being indirectly paid by the commercial testing laboratory. I’m just part of their operating costs.

I address patients’ questions about the costs of genetic testing, the likelihood that it will be covered by insurance. But there’s never a question as to how I’m getting paid, or why I’m getting paid. There’s no price tag assigned to the 30-90 minutes I spend talking with them. Sometimes patients are in a quiet place for our phone conversations. Sometimes they’re washing dishes, driving a car, picking kids up from school. After all, it’s a free call related to an impulse click on facebook. I have a Master’s Degree in Human Genetics, but my time costs them…. absolutely nothing. Or rather, the cost of my time is bundled into the cost of the agency’s services which is in turn paid by the laboratory which is in turn paid by insurers, which is in turn paid by my patients’ insurance premiums and/or taxes.

I feel less icky about this set-up than I had expected. (See the love paragraph.) Conflict of interest aside, however, this is a nasty bandage on a broken system in which the cost of genetic counseling is bundled along with the cost of testing rather than being recognized and billed for as a service provided by specialized medical professionals.

As uncomfortable as I feel getting indirectly paid by a laboratory, I feel equally but differently uncomfortable with charging patients for genetic counseling—which is exactly what I’m doing in private practice. The first patient who paid upfront and told me how valuable my time had been to her and how appreciative she was made it easier. But I still feel awkward asking patients to pay me. Most of us who have worked in hospitals have been similarly used to having the cost of our services swept up into other hospital costs and have not had to tell patients, “It will cost $X to see me.”

I think our time and services are worth $$$. Whether we work in industry, private practice, or for a hospital, I think we need to learn to be unapologetic about the fact that even if we love and find meaning in our jobs, we also work to make a living. The value of genetic counseling services should be accurately reflected in an associated cost. We’ve come a very short way from being a collection of mostly white, upper-middle class housewives who are happy to do volunteer work and don’t need to make an income. We need to take another step and get comfortable with transparently charging for the work we do.


Filed under Guest Blogger

9 responses to “The Hidden Costs of “Free” Genetic Counseling

  1. Judith D. Widmann

    Please do not refer condescendingly to those of us who entered the field in the earliest days as ” mostly white, upper-middle class housewives…” We were not “happy” to do volunteer work”. You probably don’t realize how difficult it was to get funding for a genetic counseling position. Some of us did have to start out as a volunteer until funding came through, but it wasn’t because we didn’t need to make an income.
    You do know that we helped create the field for those that came after us. We did it because we were committed to creating a profession in an emerging area of medicine that would directly affect a huge number of people, plus we craved the intellectual challenge and the direct chance to make a difference in people’s lives.

  2. Eleanor Griffith

    I have no idea what it would have been like in the early days of the profession to have to fight to have any funding for a GC position at all. I do think that we can continue to build on the work that you and others did to create a legitimate and paid profession by continuing to have monetary value assigned specifically to the provision of genetic counseling services. Working for less or temporarily working as volunteers may have been necessary to establish the value of genetic counseling services. Early genetic counselors paved the way for the rest of us by clearly demonstrating that value and creating an enormous demand for genetic counselors. I think it would be a disservice to the work that you and others put into building the profession to have our salaries consigned to a line in an operating budget of genetic testing companies.

  3. Kathryn

    One of the first patients I saw on my own took out his wallet and offered me cash for the visit. I felt like a prostitute. But the physicisn on the case reminded me that we did need to be paid for our time. I try to be transparent with families about costs, but money does cloud many issues.

  4. Carrie Haverty

    All of my time spent working in pediatric clinics were “line items in an operating budget”. The geneticists billed for his time, but we couldn’t bill insurers for mine and were unwilling to bill patients. Curious why only the genetic testing companies are called out when there are many, many of us who have, or are, working in departments (academic, not-for-profit and commercial) where we are unable or unwilling to directly bill pts or insurers for our time, but see it as part of an overall service. This is not a new phenomenon. GCs have always had to fight for recognition and reimbursement. And I hope that we can work together, no matter our employer, no matter our age, no matter our experience. There are many paths toward our common goal.

    • Eleanor Griffith

      Great point, Carrie. I’ve never worked in a pediatric setting, although in that setting there’s at least a clear role for an MD Geneticist with a physical exam being a part of the evaluation. In contrast, it seems that in a prenatal or pediatric setting, an MD is ‘necessary’ for ordering tests and for billing (with billing incident to a physician resulting in better reimbursement) but often not really involved in the cases. Have GCs
      in states with licensure seen improvements? I’ve under-informed on GC licensure efforts but generally discouraged that in most states, GC licensure comes with the requisite fees and CEU requirements— but still doesn’t authorize GCs to order genetic testing.

      Kathryn- It’s also interesting that the association that comes to mind when a woman is offered cash (even after consulting with a patient in a healthcare setting) is prostitution. I think a lot of the issues surrounding recognition and compensation are rooted in and complicated by gender. In a pediatric setting too— there are certainly a good number of male GCs and female Geneticists, but it is more often a male geneticist who is billing for his time and a female GC who is part of the operating costs. If we were a profession of 96% males rather than 96% females, I wonder how different things might be. I believe that in each PSS, reported salaries for male GCs are consistently higher than for female GCs. This is at least true for the 2016 PSS— in both clinical and non-clinical roles.

  5. Wendy Conlon

    I think that regulators and the public would be up in arms and legislation would be written if MD salaries were paid by pharma. That is the direct analogy for the genetic counselor providing genetic counseling for a test sold by the company paying their salary.

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