Advocacy

Advocacy

Together, we can improve genetic healthcare for all.

Genetic Support Foundation’s mission is to improve the quality of healthcare by providing up-to-date, objective genetic information to patients, providers, and healthcare organizations, supporting those in need of genetic services, and facilitating the adoption of best genetic practices.

The landscape of genetics and healthcare is rapidly evolving due to exciting innovations that have the power to improve patient care and change how we understand and treat diseases.

But independent genetic counselors are necessary to see that these new innovations are integrated into patient care in a responsible and meaningful way. Currently, genetic health services are underfunded, best practices for genetic testing and counseling are not always followed, and the genetic testing industry is largely unregulated.

At GSF, we're working to push for regulations that will create equitable access to genetic healthcare, protect patients, and ensure their genetic information is safe.

Reducing Conflicts of Interest in Genetic Healthcare

Patients deserve access to up-to-date, objective genetic information provided by genetic health providers and organizations. Genetic counselors have advanced training and degrees in genetic counseling. They are certified by the American Board of Genetic Counseling only after completion of rigorous training and testing requirements and are subject to regulation by licensure laws enacted in individual states.

And a growing body of evidence supports that when genetic counselors are involved in a patient’s care, genetic testing is ordered more appropriately and cost-effectively and patients receive the information they need to make informed decisions about their genetic health.

But the direct-to-consumer genetic testing marketplace is expanding at an exponential rate — and that means genetic testing is big business. In fact, it’s expected to reach $10 billion in revenue by 2027.

With all that profit comes an increasing need to regulate the market and protect patients from predatory companies, misleading marketing, poor information, and bad health testing and information practices.

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Direct to Children

Learn more about how genetic testing companies are targeting children with misleading genetic tests.

Supporting Those in Need of Genetic Services by Reducing Disparities in Genetic Healthcare Access

Consistent with our founder’s vision, our goal at GSF is to be more inclusive of those who may have difficulty accessing genetic healthcare services — including due to financial reasons. Our GSF Charity Care program helps ensure that genetic counseling services are available to all.

On top of our existing financial aid policy, which allows financial assistance that’s in line with federal poverty guidelines and may reduce cost by up to 100% for qualifying patients, our Charity Care program includes increasing efforts to reach more of an audience that may benefit from increased access to these services and may be more subject to disparities in access, including rural communities and underrepresented populations.

But a large part of the disparities in access to genetic testing results from Medicare denying coverage for genetic counseling. GSF fully supports H.R.2144 and S.1450 – Access to Genetic Counselor Services Act of 2021, which if passed into law would also increase access by allowing coverage of genetic counseling by Medicare. Despite the established benefits to patients that come with having a genetic counselor as part of their care team, genetic counselors have not been recognized as healthcare providers under the Centers for Medicare & Medicaid Services (CMS). Ironically, CMS guidelines often require genetic counseling as a prerequisite to genetic testing, but they do not reimburse genetic counselors for the services they provide — rather they hold that genetic counseling services should be bundled into the services of a CMS-approved physician.

But the fact that genetic counseling is not reimbursed as an independent service has created tremendous difficulties with ensuring equitable access to genetic counselors. At Genetic Support Foundation, more than 40% of the patients we saw in 2019 had federal healthcare coverage through Medicare or Medicaid. Medicaid recognizes and reimburses for genetic counseling in only a handful of states across the country, and Medicare never does.

This means that patients end up footing the bill for out-of-pocket for genetic counseling services. And that means that many patients who are referred for genetic counseling never make it in for an appointment because it is not a covered service under Medicare or by their health insurance provider and they are concerned about the growing cost of their medical bills.

CMS recognition of genetic counselors as healthcare providers would ensure equitable access to independent genetic counseling services for all people.

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Falling Short On Equity & Inclusion

Read more about how the ACMG Carrier Screening Guidelines are falling short.

Share Your Story

Your experience matters. Your story matters. That’s why we created the It Starts with You storytelling project. We invite you to share your story so that others can better understand what to expect. And so they know they’re not alone.

Donate to GSF

You can help give patients access to the genetic counseling and support they need.

Your philanthropic support means individuals, clinics, doctors, oncology practitioners, and families are all able to better understand and implement best practices in genetic healthcare so patients can make informed decisions about their health and the health of their families.

Each tax-deductible gift contributes to our mission of providing objective and up-to-date genetic counseling services for all who need it, regardless of ability to pay. As the only nonprofit dedicated to genetic counseling, we have no financial ties to commercial testing laboratories, so we can provide the unbiased, accurate, expert care patients need.

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