Personalized medicine emerged as a way to help clinicians determine the best treatments and prevention strategies for patients based on their molecular and genetic information. While the era of personalized medicine has ushered in a wave of innovative diagnostic and treatment potential, it also opened the door to potential discrimination and privacy issues.
Although genetic information can help predict disease risk, a host of other factors such as lifestyle and environmental factors also contribute. Predicting risk and developing a prevention plan based on genetic information is complex, which is why it was never meant to be used to determine health insurance coverage. In the early years of personalized medicine, advocates worked with legal experts and elected officials to enact laws that protect individuals’ health and genetic information.
The Genetic Information Non-discrimination Act (GINA), passed in 2008, prevents health insurance companies from requesting or using genetic tests to make coverage decisions. Information such as genetic test results, from either an individual or his or her family members, family medical history, and participation in genetic research, is protected information under the law.
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment. These protections are intended to encourage Americans to take advantage of genetic testing as part of their medical care.
GINA also prohibits employers from making employment decisions based on genetic or hereditary information. Other federal laws, including the Health Insurance Portability and Accountability Act (HIPAA) and the Affordable Care Act (ACA), also help to protect and cover your genetic information and testing.
It’s important to note that GINA does not prevent insurance companies from using genetic information to make decisions on coverage or premium costs for life insurance, long-term disability and long-term care services.
An increased interest in the healthcare space by non-conventional players including large technology companies and consumer genetic testing companies has also raised privacy concerns. It’s important to understand the privacy and informed consent policies associated with a genetic testing product, including how the genetic data will be stored, protected and used. Currently, no federal laws prevent these companies from sharing or selling the genetic information to other parties. The data are not covered under HIPAA.
It’s important to note that GINA does not prevent insurance companies from using genetic information to make decisions on coverage or premium costs for life insurance, long-term disability and long-term care services.
There also exists a patchwork of state laws that provide varying degrees of privacy and protection. The National Human Genome Research Institute provides a comprehensive list of state laws, as well as bills that haven’t passed. LawSeq, a searchable public database, offers information on federal and state laws, as well as other guidance that can help consumers understand their rights.
The next project for the group behind LawSeq is to identify important legal issues that may arise in the near future, situations that a decade ago were unfathomable. For example, genetic testing results can be used to make housing and school enrollment decisions in many states in the U.S.
Genetic data can and will become more important in our daily lives. And while insurance coverage based on personal genetic information is a top question for many, it shouldn’t be the only question.
Elizabeth Whittington is a Science Writer at Genome Creative.
