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.

Best,
Andro

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.

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!

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!

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.