DOVER – Sen. Stephanie Hansen, D-Middletown, introduced a bill Tuesday that would limit insurance companies’ ability to use genetic testing data to deny coverage or otherwise unfairly discriminate against Delawareans.
The legislation would add Delaware to a growing list of states rushing to fill a gap in federal law banning genetic discrimination as a growing number of Americans undergo genetic testing for everything from genealogical research to risk and treatment options for certain diseases.
Specifically, the Genetic Information Nondiscrimination Act of 2008 (GINA) bans health insurance discrimination based on genetic information but leaves out many other kinds of insurance, including disability, long-term care, and life insurance. That loophole is allowing insurance providers to seek out genetic testing data to determine coverage.
“Allowing insurers to discriminate based on genetic test information isn’t just grossly unfair, it is hindering the progress and implementation of genetic medicine,” said Sen. Hansen. “The advances we are making in genetic science and health could drastically improve our ability to treat diseases, extend and improve lives, but that potential is seriously hindered when every test you take carries the risk of being denied or gouged for certain insurance policies.”
“Patients simply looking to learn more about their own genes, disease risk, and best treatment options deserve more privacy and protection than that. It’s why Congress banned health insurance discrimination in 2008 and it’s why I’m proud to be part of the effort to expand these protections to other kinds of insurance today. It’s a matter of privacy, public health, consumer protection, and innovation all in one and I look forward to working with my colleagues to get this important bill passed.”
Senate Bill 144 makes three important updates to close the federal loophole and improve protections for Delawareans by:
- Clearly defining what constitutes discrimination;
- Empowering the state Insurance Commissioner to further decide and promulgate regulations around which specific genetic markers may be used for disability or long-term care insurance, provided they are reliable and are used “in a manner that is reasonably related to anticipated claims experience;” and
- Prohibiting the sharing of information from direct-to-consumer genetic tests such as genealogical and other commercial products with insurers without the written consent of the individual.
The bill is the final product of many conversations with advocates and experts from inside and outside of state government.
“Discriminatory practices in insurance underwriting inhibit consumers’ access to quality, affordable and much-needed coverage,” said State Insurance Commissioner Trinidad Navarro. “I commend Senator Hansen for her work on restricting insurers’ ability to use genetic information and testing in underwriting long-term care and disability insurance policies. If enacted, this legislation will be among the most pro-consumer statutes in the country on this issue, leveling the playing field between consumers and the big insurers. I am honored to have worked with Senator Hansen and other stakeholders, and am proud to fully support this measure.”
“Consumers look for insurance as needed stability in the variables of everyday life. From health to disability insurance these are basic necessities, and there shouldn’t be barriers to this coverage,” said Rep. David Bentz, D- Christiana and House sponsor of the bill. “Genetic testing is an extremely vulnerable and personal part of medicine, and shouldn’t be used against patients. We know the value genetic testing can have in preventive care, so allowing this form of discrimination to exist is a detriment to people’s ability to get needed care without fearing other consequences. This is an unnecessary barrier.”
Physicians from around the country have also come out to support the bill.
In 2013, the American Medical Association published a report stating that “patient care is negatively impacted by fear of genetic discrimination” and that, “while GINA provides some important protections… [it] leaves individuals vulnerable to discrimination in areas such as life, long-term care and disability insurance, and does not extend to certain sectors of the population.”
“The physician community strongly supports this legislation,” added Andrew W. Dahlke, MD, President of the Medical Society of Delaware. “It provides robust protections against the kinds of genetic discrimination that are pervasive across many segments of the insurance industry.”
The bill was assigned to the Senate Banking, Business, and Insurance Committee on Tuesday.