As midterm elections approach, candidates of both parties have hotly debated the future of health insurance coverage for pre-existing conditions. However, these conversations fail to touch on an related issue of increasing importance—discrimination against patients with genetic markers for illness. Though the Genetic Information Non-Discrimination Act (GINA) widely prohibited discrimination based on genetic makeup by health care insurers and employers when it went into effect in 2008, the law left gaps in its protections. As a result, many Americans have been reluctant to seek out medical care involving genetic testing for fear that their insurance company will raise premiums or drop their coverage. GINA anticipated a future with greater gene-based medicine, but further advances will require an expansion of restrictions on genetic discrimination.
Former Senior Research Analyst, Center for Technology Innovation - The Brookings Institution
Darrell M. West
Senior Fellow - Center for Technology Innovation
Douglas Dillon Chair in Governmental Studies
GINA already has several loopholes where coverage might be expected. The act does not prevent discrimination by life, disability, or long-term care insurance companies, and does not apply to employers with 15 or fewer employees. GINA does not apply to federal employees and those in the military, who both have separate but similar policies. In order for GINA to apply, you also must be asymptomatic, but qualifying as asymptomatic may be tricky in a technologically advanced health care environment. If a patient is already displaying early symptoms, and receives a genetic test to look for possible causes, GINA does not prevent discrimination.
The combination of electronic health records, wearable devices tracking health data, and improved genetic testing will lead to a massive influx in biometric information accessible by your health care providers and insurers. Vast quantities of available data blur the distinction between asymptomatic and not, and non-discrimination laws will need to account for this ambiguity. Early stages of conditions that would previously be considered asymptomatic now raise doubts if genetic testing shows a high likelihood of developing the condition.
The lack of clarity will become an issue for pre-existing conditions coverage as well. Provisions of the Affordable Care Act (ACA) that took effect in 2014 prohibit government insurers and private health insurance companies from limiting coverage for conditions that existed prior to purchase of an insurance plan. But President Trump and Congressional Republicans have been vocal about repealing the ACA, leaving the future coverage of pre-existing conditions in doubt. In the case that these protections are weakened or overturned, any genetically-inherited disease could be considered a pre-existing condition that leads to the denial of coverage. If a young adult tests positive for the genetic markers for Huntington’s disease, a neurodegenerative condition that varies in the age when symptoms develop, should this count as a pre-existing condition?
Since long-term care insurance is separate from most health care plans, GINA does not prevent genetic discrimination for long-term care. A long-term care insurance company to demand genetic test results from new enrollees, or refuse coverage for a patient with genetic markers that are thought to cause Alzheimer’s. This leads to a problematic scenario in which assisted living care becomes the most prohibitive for those who need it the most.
GINA also does not prevent discrimination in other contexts. In 2012, a sixth-grader was temporarily removed from his public middle school because a genetic test displayed markers for cystic fibrosis. The genetically-inherited lung disease can leave children vulnerable to infections spread by others who have it. Although the child did not develop the disease, families of other students with cystic fibrosis demanded that the district remove the child. A lawsuit claiming genetic discrimination failed because there was no precedent for the case, and GINA did not apply. As more health metrics are recorded, Americans will need to be more wary of the unprecedented realms in which genetic discrimination can occur.
GINA has relieved many American’s anxieties about genetic testing, allowing more patients to benefit from proactive medical care. But the protections that GINA offers may not be as far-reaching as they seem, especially in cases outside of health insurance. The transition from paper to electronic health records, along with an explosion of trackable health data, will likely cause the greater exploitation of the loopholes in GINA. As we enter into a health care system augmented by more data, GINA will need to expand its protections to encourage Americans to take advantage of genetic testing without the fear of repercussions.
Julia Slisz contributed to this blog post.