You're listening to the Disability Law Lowdown, show number 42, with your host, Jacquie Brennan.
Today's podcast is about the Genetics Information Non-Discrimination Act, otherwise known as GINA. GINA was an act that was passed last year and so has been in effect since this year and has recently had regulations that were enacted to further the purpose of GINA. So we're going to have a little discussion about how we got here and why we have a law called GINA.
Genetics of course continues to really transform how we think about our health. Family health history helps people to understand the hereditary factors that go into diseases and genetic research has contributed to that so that we know more about the occurrence and the progression of disease and we can measure different medications and therapies and how effective those are. And the research has resulted, and of course, the many genetic advances and some of those advances is seen in the number of genetic tests. The number of genetic tests has increased dramatically over the last fifteen years and we now have tests that are available for the very rare disease as well as for common diseases. The benefits of getting this genetic information into our hands that are tremendous because it's very helpful to know what we might be looking at in the future and very helpful to know what we're facing. People can be more proactive, they can make more informed decisions and just having knowledge about your own genetic makeup can be really invaluable when you're talking about the delivery of healthcare services.
But, of course, the problem has always been since we started having these, this information was that it could be misused. And no one is really exempt from this because most of us carry a number of mutated genes and genetic discrimination is a potential concern for everybody. Now, we have been having this sort of proposed federal law to cover genetic information non-discrimination for a lot of years. It was first introduced back in 1995. But it never became a federal law until last year. There were a few state laws but of course when you have that kind of thing, have different sorts of protections in different states and so it's very difficult and people that had privacy protections even buy HIPAA thought those would cover genetic information, but it really didn't.
It didn't prohibit insurers in the individual health insurance market from requiring genetic testing, or from denying coverage based on genetic information. So the Genetic Information Non-discrimination Act, GINA, provides this federal basis for these protections. And as health care costs are rising, individuals continue to worry about health insurance, and employers, and as they look for ways to save money, they're worried that that will result in using this information as way to cut costs.
But now because of the passage of this law and because we are now working under the effects of this law, that is no longer lawful. GINA provides legal protections in health insurance and employment for every person in the United States.
Title One covers non-discrimination in health insurance, genetic nondiscrimination. So it covers genetic information of an individual and the genetic information of family members. For example, in determining a family health history of a disease. GINA does not cover an individual's manifested disease or condition. So a condition where you are already experiencing symptoms or you're already getting treatment or you've already been diagnosed with this, that is not what GINA is protecting against.
But GINA outlines which practices are unlawful for health insurers when they're using genetic information. So specifically, GINA prohibits these things. Health insurers may not require people to provide their genetic information or the genetic information of a family member to the insurer, for either eligibility, coverage, underwriting or premium setting decisions. Health insurers may not use genetic information, either collected intentionally or incidentally, to make enrollment or coverage decisions. Health insurers may not request or require that an individual or a person's family member undergo a genetic test. And in Medicare supplemental policy and individual health care insurance markets, genetic information cannot be used as a pre-existing condition.
Title Two covers genetic non-discrimination in employment. And it provides, again it doesn't cover a person's already manifested disease or condition, where the person has already been experiencing symptoms or has had treatment, or has been diagnosed. But it does outline unlawful activities for an employer, an employment agency, a labor organization or a training program in the use of genetic information. So employers are prohibited from doing these things. An employer may not use genetic information in making decisions about hiring, promotion, terms or conditions, privileges of employment, compensation, or termination. An employer, employment agency, labor organization, or training program may not limit, segregate, or classify an employee or member or deprive that employee or member of employment opportunities on the basis of genetic information. An employer, employment agency, labor organization, or training program may not request, require, or purchase genetic information of the individual or family member of the individual except in very rare cases.
An employment agency, labor organization, or training program may not fail or refuse to refer an individual for employment on the basis of genetic information. Nor may the agency, labor organization or training program attempt to cause an employer to discriminate against an individual on the basis of genetic information. An employer, labor organization, or joint labor management committee may not use genetic information in making decisions about the admission to, or employment in any program, for apprentiship or training or retraining including on the job training. And a labor organization may not excluded or expel from membership or otherwise discriminate against an individual because of their genetic information.
For health insurers, of course, it's important to remember what the unlawful insurance practices and discriminatory practices are because the use of genetic information either collected with intent or incidentally to make enrollment of coverage decisions is unlawful as is the request or requirement that an individual or individuals family member undergo a genetic test and also the use of genetic information as a pre-existing condition in the Medicare supplemental policy and individual health insurance markets is also a violation. The regulatory process for GINA has already begun. Recently new regulations were issued. That is what we're going to discuss next.
The Department of Health and Human Services recently released an announcement that they were issuing new rules that protect patients' genetic information. People's genetic information will have greater protection because of these new regulations that were issued recently by the US Departments of Health and Human Services, the Department of Labor and the Department of the Treasury. This final rule will help ensure that genetic information is not used against anyone in determining health care coverage and it's also going to encourage more individuals to participate in genetic testing and that in turn can help better identify and provent certain illnesses.
Health and Human Services' Secretary, Kathleen Sebelius, said echoing the late Senator Ted Kennedy, "Our efforts to protect Americans undergoing genetic testing from having the results of that testing used against them by their insurance companies is one of the few major new civil rights of the new century." She continued, "Consumer confidence in genetic testing can now grow and help researchers get a better handle on the genetic basis of diseases. Genetic testing will encourage the early diagnosis and treatment of certain diseases, while allowing scientists to develop new medicines, treatments and therapies."
The final rule will implement Title One of the Genetic Information Non-discrimination Act of 2008, otherwise known GINA. So under GINA, this final rule, group health plans and insurers in the group market, that is usually employers who offer group health insurance, cannot do several things. They cannot increase premiums for the group based on the results of one person's genetic information. They can't deny enrollment to anyone based on the genetic information. They can't impose a pre-existing condition exclusion, you know, saying that "Well, your genetic information indicates you already have this problem" even though maybe you wouldn't have known about it, and they can't do other forms of insurance underwriting based on genetic information.
And in the individual health insurance market where you're not under a group plan, but you go out into the market and try to get individual health insurance, GINA prohibits issuers of these policies from using genetic information to deny coverage, to raise premiums or to impose those pre-existing condition exclusions. Also, under GINA and the new regulations, group health plans and health insurance issuers in both the group health insurance market and individual health insurance market, cannot request, require, or buy genetic information for underwriting purposes, or prior to and in connection with enrollment. And finally, plans and plan issuers are generally prohibited from asking either individuals or family members to undergo a genetic test.
Secretary of Labor, Hilda Solis, said "Today's genetic technologies yield data that are vital to helping Americans make personal medical decisions. It is essential that we protect such information and ensure that it is not misused by health plans or insurers." She went on to say, "The rules issued today protect individuals against the unwarranted use of information related to their personal health because no one should have to fear that disclosure of their medical data will put their job or health coverage at risk."
Additionally, Health and Human Services, through its Office for Civil Rights, issued a notice of proposed Rule Making with a sixty day comment period to propose changes to the Health Insurance Portability and Accountability Act, which is otherwise known to everybody far and wide as HIPAA, to the HIPAA privacy rule, to prohibit health plans from using or disclosing genetic information for underwriting purposes. This proposed rule, that was just recently published, modifies the HIPAA privacy rule pursuant to GINA Title One, so that it clarifies that genetic information is health information and to prohibit the use and disclosure of genetic information by any covered health plan for eligibility determinations, computing how much premiums will be payed, the applications of the pre-existing condition exclusions and any other activities related to the creation, renewall or replacement of a contract of health insurance or health benefits. In combination with the new penalties for violations of HIPAA privacy rule, and as provided for by the American Recovery and Investment Act of 2009. any use or disclosure of genetic information in violation of the HIPAA privacy rule, could result in a fine of 0 to ,000 or even more for each violation.
You can read more about the new regulations at the Federal Register which is at www.FederalRegister.gov. You can view those there by searching on the Web site or you can go to www.hhs.gov/ocr/privacy. Thanks for joining us today. Be sure to tune in again.
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