Genetic counselors, genetic interpreters, and conflicting interests

by Katie Stoll, Amanda Mackison, Megan Allyse, and Marsha Michie

The booming genetic testing industry has created many new job opportunities for genetic counselors. Within commercial laboratories, genetic counselors work in sales and marketing, variant interpretation, as “medical science liaisons” to clinicians, and providing direct patient care. Although the communication skills and genetics expertise of the genetic counselor prepare them well for these roles, they also raise concerns about conflicts of interest (COI).

Why are genetic counselors leaving clinics and hospitals for industry jobs? Alongside greater job flexibility and taking on new challenges, a big reason is better pay. Hospitals and clinics have difficulty competing with the higher salaries at commercial labs because of continuing challenges in insurance reimbursement. Apart from limited preventive care covered under the Affordable Care Act, genetic counseling is inconsistently covered by private payers. Medicaid reimbursement for genetic counseling is state-dependent, and Medicare does not recognize genetic counselors as reimbursable health care providers at all.

Genetic counselors’ primary objective has historically been to help patients navigate difficult medical genetic information and decisions, supporting their autonomy. But as laboratory employees, they must also navigate their employer’s financial interests¾including increasing the uptake of genetic testing. In this changing landscape, can the profession of genetic counseling maintain the bioethical principles of beneficence, informed consent, and respect for autonomy that have been its foundation and ethos?

For example, in the area of prenatal genetics, genetic counselors have historically opposed the routinization of reproductive genetic testing—instead advocating for counseling to support informed patient decisions about which testing (if any) should be done. Now, however, laboratory-employed counselors are often placed in obstetric clinics, or provide phone based genetic counseling for free to counsel patients about reproductive testing, sometimes only after the testing is completed. And, while they may not view themselves as conflicted, their commercial employment has led some patients to question the ability of genetic counselors to offer unbiased counseling.

With a proliferation of new genetic tests and a limited workforce, will pre-test genetic counseling become a thing of the past? Will genetic counselors evolve into genetic interpreters, providing information about the results of genetic testing, rather than providing counseling and helping patients choose whether to have testing at all? Is this the labs’ goal?

Uncertain information from many complex genetic tests can find some patients unprepared, so that results are devastating rather than empowering. Labs touting their “simple” and “trusted” tests encourage obstetrical care providers to recommend genetic testing to their patients by promising that genetic counseling is included. What may be lost in connecting with genetic counselors through these polished, pro-testing websites, however, is nuanced, informed decision-making about whether to undergo a particular test in the first place.

The shift in genetic counseling employment represents a significant change in priorities—one that inherently favors the industry’s goal of more testing over informed, autonomous patient decisions. Moreover, this trend may well hinder the efforts of genetic counselors to gain recognition as reimbursable professions under Medicare. When labs bundle genetic counseling into the cost of genetic testing, it becomes harder to argue for reimbursing independent genetic counseling as a stand alone service. And there is a clear financial incentive for the genetic testing industry to undermine reimbursement for independent genetic counseling: independent genetic counselors, who may encourage more informed (and parsimonious) use of genetic testing, do not maximize testing uptake like genetic counselors who are employed as sales reps, or who don’t see patients until tests are already done.

What do we risk if health policies do not ensure access to independent genetic counselors to help patients navigate complex decisions about genetics in their lives? While genetic counselors bring value to new roles, continuing on the current path could further threaten the sustainability of independent genetic counseling services—at a time when they are needed more than ever.

Note: Crossposted from Harvard Law’s Bill of Health blog. This post is a followup to our recent article in Genetics in Medicine.


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