Imagine a patient walking into a genetics clinic, eager to understand their genetic risks and make informed decisions about their health. However, instead of a qualified genetic counselor, they encounter a healthcare professional with no standardized training or accountability in genetics. This scenario unfortunately remains a reality in states without licensure for genetic counselors.
Licensure can be boiled down to this: permission to practice.
As genetic testing is playing a larger role in the diagnosis and treatment of health conditions, it's clear: we need every state to safeguard patients with licensure. Licensure is a way to ensure genetic counselors have completed the rigorous training for the provision of genetic counseling across specialties. Just like one wouldn't trust a dentist without a license, there’s no reason to trust genetic counseling services by anyone but a licensed, qualified genetic counselor.
The case for protection
The primary purpose of genetic counseling licensure is to protect patients by ensuring genetic counselors have the appropriate training in medical genetics and counseling. Without licensure, anyone can call themselves a genetic counselor. This lack of regulation leaves patients vulnerable to misinformation, misinterpretations, and potentially, devastating consequences. Without genetic counseling licensure, there’s no penalty to practicing genetic counseling without permission.
The harm that could come from inadequate genetic counseling is very real and very substantial. Incorrectly ordered tests, misinterpreted results, and inaccurate risk assessments can lead to unnecessary surgeries to manage risks for hereditary conditions, missed diagnoses, and even misinformed pregnancy decisions. These few examples are heartbreaking realities for some patients who have received inadequate genetic risk assessments, testing and results interpretation.
Most hospitals require licensure for credentialing purposes. Without credentialing, health insurance companies often don’t recognize genetic counselors as providers, and don’t provide reimbursement for their services.
An environment for empowerment
Based on their specialized training, genetic counselors are uniquely positioned to integrate the interpretation of family and medical histories to assess the chance of disease occurrence or recurrence, education about inheritance, testing, management, prevention, and research, and counseling to help individuals make informed choices and decisions about their health conditions and risks. Although the qualifications and credentials required to obtain licensure vary by state licensing boards, they all require a specialized graduate degree with academic training that includes topics and experiences in both medical genetics and counseling, as well as certification by the American Board of Genetic Counseling. Once these qualifications are met, the permission slip is granted.
In addition to protecting the public, licensure increases the accessibility to genetic counselors. Most hospitals require licensure for credentialing purposes. Without credentialing, health insurance companies often don’t recognize genetic counselors as providers, and don’t provide reimbursement for their services. This makes it difficult for hospitals to hire as many genetic counselors as they need to meet the needs of their patients, as without insurance coverage, they are not incentivized to include genetic counselors in their budgets. The lack of genetic counselors ultimately places those communities at a greater risk for harm when genetics services are delivered by non-genetics professionals, or not delivered at all.
Greater impact of licensure
Genetic counseling is a licensed profession in 34 states as of this writing. New York, the birthplace of genetic counseling, still lacks this vital protection. It's time to bridge this gap and join the 34 states that prioritize patient safety and empower individuals with informed choices about their health.
Licensure isn't just a permission slip, it's a powerful promise of protection, empowerment, and a healthier future for all. I urge you to speak up, educate your representatives, and help build a future where everyone has access to the expert guidance they deserve.
To help in New York State genetic counseling licensure efforts, email publicpolicy@nysgeneticstaskforce.org. For more genetics news by Halie, subscribe to The Sequence weekly newsletter.
About the Author:
Halie May (She/Her) is a certified genetic counselor and the Chair of the Public Policy Committee of the New York State Genetics Task Force. She is an alumna of the Sarah Lawrence College Graduate Program in Human Genetics and a member of the Sarah Lawrence College Alumni Association. The views expressed in this article are her own and do not represent those of Sarah Lawrence College.