NEW YORK (GenomeWeb) – Almost seven years after the Genetic Information Nondiscrimination Act (GINA) was signed into law, it has only been cited in a limited number of cases and remains largely unknown to the majority of the US population, while concerns about gaps in its coverage and fear of discrimination persist, according to a Perspective article in The New England Journal of Medicine this week.
According to the authors, Robert Green and Denise Lautenbach from Brigham and Women's Hospital in Boston and Amy McGuire from Baylor College of Medicine, the law had a twofold mission: to prevent individuals from genetically based discrimination in the workplace and with regards to health insurance, and to alleviate fears about potential discrimination, which would allow them to participate in genetic testing and research.
Since the law took effect in 2008, there have only been a small number of cases where it has been cited for workplace discrimination, while genetic testing in general took off during that time, the authors noted. For example, the Equal Employment Opportunity Commission estimated there were just 333 GINA-related charges of employment discrimination in fiscal year 2013, compared to 90,000 charges in other areas, and most of the GINA cases also included claims related to the Americans with Disabilities Act.
Meanwhile, GINA remains widely unknown to the American public. A survey of almost 1,500 people the authors conducted last summer, for example, found 79 percent of respondents to be unfamiliar with GINA. Those who said they were familiar with the law had significant misperceptions about it.
Curiously, after reading about GINA, 30 percent of survey participants said they were more concerned about discrimination than before. Fear of future discrimination, which GINA was supposed to dispel, "may be preventing some people from participating in translational research studies that are exploring the real-world consequences of utilizing genomic information," the authors wrote.
For example, 25 percent of prospective participants in the MedSeq project — a research project headed by Green that is studying the medical impact of whole-genome sequencing — declined to take part because of fear of insurance discrimination.
One reason for these persisting fears might be the gaps in GINA's coverage. The act does not include genetic discrimination for life, disability, or long-term care insurance, for example, which has been reported elsewhere to prevent individuals from taking genetic tests, even though some states have extended protection to those insurance types.
The authors don't see many insurance companies in these areas requesting genetic tests results today, despite the overall increase in genetic testing. "Perhaps GINA sent a powerful symbolic message to all insurers that society would not tolerate genetic discrimination, and that message was heard," they wrote.
However, this might change in the future as more individuals seek life, disability, or long-term care insurance based on predictive genetic testing, and as insurers seek to categorize them by risk. In a 2010 study, for example, Green and his colleagues found that individuals whose genetic test results put them at increased risk for Alzheimer's disease were more likely to purchase long-term care insurance.
"As more people obtain their own genetic risk information, companies selling such products may feel forced to test customers genetically in order to stratify customer risk," the authors wrote. "Alternatively, we may eventually have to abandon risk-based underwriting and adopt a more unitary pricing system that pools risk."
Overall, the authors take issue with basing future disease risk on genetics alone. "It's now clear that everyone carries genetic variants that will influence, but in most cases not exclusively determine, one's health status," they wrote, and disease may be prevented or minimized through interventions such as diet, exercise, or therapies.
"Eventually, the notion of immutable genetic risks may become obsolete, and it may be less important to grant genetic information special protection than to protect everyone from all forms of medical discrimination," they wrote.