Skip to main content
Premium Trial:

Request an Annual Quote

ACMG Urges Expanded Telegenetics Services to Address Growing Demand, Reduce Health Disparities

NEW YORK – The American College of Medical Genetics and Genomics (ACMG) is calling on US policymakers to lower barriers to wider adoption of telegenetics as a way to address growing demand for genetics services and reduce health disparities.

In a "Points to Consider" policy statement published Tuesday in the journal Genetics in Medicine, ACMG called telegenetics "a necessary, effective, and invaluable care modality that allows for provision and continuation of care without the patient and genetics healthcare professional being in the same physical location," one that has proven its mettle during the COVID-19 pandemic.

"Continuation of telegenetics services has the potential to reduce disparities in access to care that exist given systemic racism, implicit bias, and many other forms of discrimination that persist within the US healthcare system," ACMG's Advocacy and Government Affairs Committee wrote in the article.

"We have seen a dramatic increase in telemedicine use during the COVID-19 pandemic, but research suggests access is not equitable across different population groups," lead author Heather Williams said in a statement. "Policy efforts to ensure equitable access to genetics services via telehealth are necessary. We can continue to address disparities by eliminating barriers to accessing the medical genetics workforce," added Williams, a clinical laboratory geneticist who is now director of clinical science oncology at Tempus Labs.

ACMG said that telegenetics has been particularly effective in increasing access to care for patients with rare genetic disorders who would otherwise have to travel hundreds or thousands of miles to see specialists.

According to ACMG, Wyoming, the least populous US state, with just 580,000 people, has no medical geneticists and just one genetic counselor. The District of Columbia, home to about 670,000 people in a metropolitan area of 5.4 million, has 19.1 medical geneticists and 18.4 genetic counselors per 500,000 population.

"Without telegenetics, residents of the most underserved states or localities simply do not have access to genetic services," the statement said.

However, barriers continue to include interstate licensure issues for medical professionals and lack of payor reimbursement for telehealth services. The Centers for Medicare and Medicaid Services (CMS) waived its rule against Medicare and Medicaid coverage of telehealth in urban areas for the COVID-19 pandemic, but it will take federal legislation to make this change permanent after the public health emergency ends.

ACMG noted that it has been advocating in favor of such legislation. "Telegenetics services should be covered for all patients regardless of proximity to a hospital, clinic, or genetics healthcare professional," the organization said in the article.

ACMG called for "payment parity," or reimbursement for telegenetic services at the same rates as in-person care and counseling. This policy was part of the emergency CMS expansion of Medicare coverage during the pandemic, but it is not permanent.

The organization also noted that disparities in access to technology remain, particularly since some elderly and low-income people may lack home broadband internet or smartphones, while others might have limited wireless data packages. "Policies are needed to improve access to such technologies either within the home or at community centers that allow for appropriate privacy," ACMG said.

US law does not currently permit Medicare to cover audio-only remote visits, so those without broadband must pay out of pocket.

ACMG said that the Infrastructure Investment and Jobs Act, signed into law in November 2021, "will be a monumental step in addressing this digital divide and improving access to clinical genetics care" because it appropriates $65 billion for broadband internet.