In a previous post, I mentioned that one factor often left out in the discussion of prenatal genetic testing is the cost of the testing itself and how that may influence decisions. Turns out that the advice a patient receives about prenatal testing may be influenced by the cost of giving that advice … and who is paying for it.
Andrew Pollack writes for the New York Times and has been covering the development of prenatal testing for the past several years. I recall speaking with him in 2008 for several reasons: it was cool to be talking to a New York Times reporter; I was driving up to Montreal from Albany to present at an international obstetrics conference; and, being distracted by the call, I failed to notice a New York State Trooper until it was too late. I got a speeding ticket as a souvenir for my New York Times interview.
During the summer, Pollack wrote a piece worth remembering on the role that finances play in the administration of prenatal testing. Specifically, how more and more genetic counselors are being employed by testing laboratories, and the possible conflict of interest this raises.
In 1990, only 2 percent of all genetic counselors were working for testing laboratories. Today, that figure is 9 percent, or almost 300 genetic counselors across the country. The reason is primarily financial.
As Dr. Mark Evans, a director of a Manhattan clinic for high-risk pregnancies, is quoted by Pollack:
The problem is that genetic counseling is a time-consuming, labor-intensive process that fundamentally is a money loser.
This is because, while Medicaid, Medicare, and private insurance will cover the costs of the testing itself, more often than not genetic counseling is not. Yet, the American Congress of Obstetrics & Gynecologists (ACOG) recommends referral to a genetic counselor following a prenatal test result and the newest statements on the newest prenatal screening technology–Non-Invasive Prenatal Screening (NIPS)–recommend both pre-test and post-test counseling.
The issue of a potential conflict of interest based on where the money is coming from is nothing new. ACOG issued an opinion on the “Ethical Issues in Genetic Testing” in 2008 recognizing the conflict potential:
[Neutral counseling] may be compromised through the use of patient education material or counselors that are provided by a company that might profit from a patient’s decision to undergo testing.
But, in the context of prenatal genetic testing that concern seems to be placed to the side out of a sense of economic realism:
- Professional guidelines recommend genetic counseling;
- Genetic counselors are trained in, and are to provide, non-directive counseling;
- Genetic counseling is a time-intensive process, not conducive to 15-minute prenatal visits;
- Genetic counseling is not reimbursed as part of prenatal care by third-party payers;
- Money clearly effects behavior–i.e. who pays your salary affects your relationship with that payor source;
- But, to afford genetic counseling services, healthcare systems will use genetic counselors employed by testing labs even if they might be influenced by a company whose mission is not informed decisions, but having more patients accept their tests.
This is not to say every genetic counselor getting a paycheck from a testing laboratory has abandoned their ability to provide non-directive counseling. But, as Pollack’s article reports, patients are confused as to who a genetic counselor works for, believing they work for the health system they’re being seen by, not the testing laboratory whose test the genetic counselor is counseling them about.
No matter the effort, when you “follow the money” there’s an appearance of a conflict of interest when a genetic counselor employed by a genetic testing company is counseling a patient about whether to accept genetic testing.