Do Protections Against Genetic Discrimination in Health Coverage Go Far Enough?

Published on: 

The Genetic Information Nondiscrimination Act (GINA) protects most consumers from losing health coverage or their job if they pursue genetic testing. But authors of a new article in The New England Journal of Medicine explore the implications of testing for life, disability and long-term care insurance.

The Genetic Information Nondiscrimination Act (GINA) gained praise at its 2008 passage as a way to encourage patients to pursue genetic testing and new therapies without fear of losing their health coverage or their job. The Affordable Care Act (ACA) added additional protections, barring insurers from denying coverage based on pre-existing conditions.

But whether GINA has been a success is harder to gauge, according to an article published today in The New England Journal of Medicine, (NEJM) “GINA, Genetic Discrimination, and Genomic Medicine.” The authors, led by Robert C. Green, MD, MPH, explore the complexities and gaps left by GINA and the ACA, not only in employment and health coverage, but also in life, disability and long-term care coverage. Green, et al, explore whether “discrimination” based on risk in these areas is fair and appropriate, given the self-selecting nature of these types of insurance, and whether such questions will matter in the future.

Prior to GINA, patients routinely declined testing or obtained it anonymously, which meant they could not bill their health insurer for it. Whether GINA “has allayed fears of discrimination as intended” is hard to assess, the authors find.

For starters, a poll found 79% of Americans are still largely unaware of the law; when they are educated about it, the authors write, some declined to participate in a project in which whole genome sequencing would be stored in their medical records.

Gaps in employment, health protection


The authors find that in fiscal year 2013, only 333 GINA-related charges of employment discrimination were filed at the Equal Employment Opportunity Commission, compared with more than 90,000 claims in other areas. Most GINA claims accompanied those filed under the Americans with Disabilities Act after an investigation revealed that an employer asked about family history. As the authors note, GINA leaves a gap when a person has manifest disease but is not yet disabled under the ADA.

On the health side, GINA does not apply to employers with fewer than 15 employees, to the US military, the TRICARE health system, the Veterans Health System, the Indian Health Service of the Federal Employees Health Benefits Program, although other policies may provide protections.

Complicated Questions in Life, Disability Coverage

The authors discuss at length the question of whether federal or state laws should allow higher premiums or refusal to sell coverage—known in the insurance industry as an exclusion—based on genetic test results. Without citing studies, they write that while some companies can use genetic information and do ask about family history, “There is little evidence that even those companies are requesting and utilizing genetic test results in their underwriting, despite recent increases in genetic testing.” However, in September 2013, during a panel discussion on genetic testing convened by The American Journal of Managed Care, Otis Brawley, MD, chief medical officer for the American Cancer Society, said his organization had heard anecdotal reports of women being denied life insurance after BRCA testing.

As the NEJM authors discuss, life, disability and long-term care insurance are altogether different products than health coverage. While health insurance is increasingly viewed as essential for access to health care and perhaps a “right,” the others are not universal and involve a high degree of self-selection. Indeed, the pricing of all 3 types of coverage is predicated on the ability of insurers to adequately assess risk and price premiums accordingly. If consumers could obtain and withhold genetic information from insurers on a large scale, they write, “low-risk consumers will drop out of the mix and higher-risk consumers will disproportionately purchase coverage, forcing companies to raise prices and causing a ‘death spiral’ of adverse selection.”

Indeed, a study led by 1 co-author has already found a link between genetic testing results and choices in long-term care coverage.

What’s Next?

Where will genomic medicine go from here? The authors speculate that as consumers are able to learn more about their future risk, they will be able to adjust diets, exercise patterns, and pharmaceuticals to limit the inevitability of their genetic fate. Thus, the question of risk may become moot. “It may become less important to grant genetic information special protection than to protect everyone from all forms of medical discrimination,” they write.

Around the Web

Perspective: GINA, Genetic Discrimination, and Genomic Medicine

AJMCtv Panel Discussion on Genetic Testing