State Laws Governing Genetic Discrimination

State Laws Governing Genetic Discrimination

by Dr. Hsien-Hsien Lei
Posted January 7, 2009 in DNA and the Law

illinois health Following the signing into law of the Genetic Information Nondiscrimination Act (GINA) in May 2008, Illinois lawmakers also want to make it illegal for businesses to discriminate against their employees based on DNA test results.

Why do states need to pass their own laws when a national law already exists? According to the National Human Genome Research Institute’s Genetic Discrimination Fact Sheet:

Before the federal law was passed, many states had passed laws against genetic discrimination. The degree of protection from these laws varies widely among the different states. The federal law sets a minimum standard of protection that must be met in all states. It does not weaken the protections provided by any state law.

According to a table compiled by the National Conference of State Legislatures (NCSL) of current state laws regarding the use of genetic information in determining health insurance, Illinois already prohibits insurance companies from:

  • Using genetic information to establish rules for eligibility
  • Requiring genetic tests/genetic information
  • Using genetic information for risk selection or risk classification purposes
  • Disclosing information without informed consent

States that so far have no laws in place against the use of genetic information in health insurance include:

  • Mississippi
  • North Dakota
  • Pennsylvania
  • Washington

NCSL also has information on other state genetics laws including those pertaining to employment, frozen embryos, and genetic privacy. Their Genetics Legislation Database also has searchable information on genetics bills considered in state legislatures from 2004 to present.

If you live in the U.S., how does your state fare on genetic nondiscrimination legislation?



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Comment by Andro Hsu

Hi Hsien,

I don’t know when the Illinois law was passed, but the Tribune article says this law will take effect in the new year; i.e. it was passed last year (before or after GINA passed). According to NHGRI, GINA’s insurance laws do not take effect until May 2009 and the employer laws do not take effect until November 2009. So Illinois residents are protected with respect to employer discrimination as of January 1, 2009.

As you found, Illinois law prohibits insurance companies from “using genetic information for risk selection or risk classification purposes”. But Andrew Yates over at Think Gene correctly points out that the text of GINA does not “preclude a group health plan from obtaining or using the results of a genetic test in making a determination regarding payment.”

IANAL, but what exactly “payment” means is not specified. Plans can’t kick you off insurance or deny coverage based on genetic information, but if a doctor (not the insurance company) requests a genetic test, the data go into your medical record, and from there plans *may* use the genetic data to determine “payment”. I don’t know if that refers to the setting of premiums or whether specific procedures will be reimbursed, but both of those seem to me like they could fall under risk classification or selection. So the Illinois protections are stronger than GINA’s, which seem to have a loophole.

Hi Andro!

Thanks for clarifying the timeline as to when the various laws come into effect.

Re: IANAL (I Am Not A Lawyer), I had to look that up!

Comment by Hillary Lewis

Hi, Andro. The regulations for implementing GINA have not been written, so it’s unclear exactly how the agencies will interpret the Act’s requirements. With respect to your specific question, you will note the GINA forbids health insurers from requiring or ACQUIRING the information. If you have a genetic test and they want to find out if it was medically indicated, and thus, reimbursable, they have to ask the doc AND be extremely cautious not to acquire more information that the barest minimum required to make the reimbursement decision.

We come back to the regs again, because how will this be policed? Another consideration, how do we get word out to the physicians so that they are aware of what the insurance companies are allowed to know, and inform accordingly? Food for thought.

Comment by Andro Hsu

Hi Hillary,

Thanks for responding. With respect to insurers acquiring information, GINA says that while insurers are prohibited from requesting or requiring someone to take a test, the prohibition specifically does not preclude “a group health plan from obtaining or using the results of a genetic test in making a determination regarding payment.” So again, it seems to very clear that requiring a test is forbidden, but once the doctor orders a test, insurers may obtain the result if it is available to them, e.g. it is in the individual’s medical record.

You’re right that only the barest information may be requested, but my question is still what “determination regarding payment” means.


(Comments wont nest below this level)
Comment by Hillary Lewis

Despite the fact that many states have legislation on the books regarding discriminatory uses of genetic information in health insurance and employment arenas, there is a great deal of difference in how states define the type of information that will be protected. The enforcement schemes are also of questionable value to someone who has been denied health insurance because of family history or participation in a genetic research study.

GINA sets minimum standards for what is protected and what the penalties are for violating the requirements of the Act. Some states go farther and protect more, but most actually cover less because of basic definitional shortcomings. I, for one, was glad to welcome the passage of GINA in May ‘08, and will be working hard to get the gaps (long-term, chronic care, and life insurance is not covered under the Act) filled so that people are free to discover as much or as little about their genetic predispositions as they desire!

Thanks, Hillary! Glad to see that we DO have a lawyer here to explain the legal rigamarole. As Andro pointed out, there are bound to be loopholes so people should be aware that genetic discrimination may still happen in select circumstances without legal repercussions.


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