Kansas gives its residents some protections against genetic information being used in insurance decisions, but it looks like these laws leave lots of holes, especially when it comes to life insurance.

The state covers the use of genetic information with one fairly concise law, Statute 40-2259. This section of the Kansas insurance code covers health insurers and healthcare providers quite thoroughly. These organizations may not:

• Require or request a genetic test.
• Ask a person if they or a relative has undergone genetic testing.
• Make the providing of care or insurance dependent whether a person or relative has undergone a genetic test.
• Use the fact that a person has undergone a genetic test, or the results of a genetic test, to set rates.

But when the Kansas statute gets to long-term care, disability, and life coverage, it gets weaker:

• These types insurance providers are not barred from requiring or requesting a genetic test or asking applicants and policyholders about whether they’ve undergone such testing.
• In long-term care and disability coverage, insurance providers can’t make the provision of insurance conditional on whether a person or relative has undergone a genetic testing.  But when it comes to life insurance, it appears that they can.
• The requirements around using genetic information to set insurance rates are a little squishy. In one section, the law states that long-term care and disability providers may not use the fact that a person has undergone a genetic test, or the results of a genetic test, to set rates. Life insurers, however, are exempt from this prohibition. And in the very next paragraph, the law states that rates for these types of insurance may be “reasonably related” to the risk involved.

What’s the bottom line? It looks like Kansas residents have a few limited legal protections against the use of genetic-related information in long-term care and disability insurance. There appear to be few, if any, restrictions against the use of genetic-related information in the area of life insurance.

We’re not legal analysts or attorneys, so if you have detailed questions about Kansas or laws in any other state, please check with a local genetics professional, such as a genetic counselor or lawyer who specializes in this area.

Laws regarding the use of genetic information in life, disability, and long-term care insurance are different in every state, and can be confusing, even to experts. California, for example, appears to offer protections in life and disability insurance, but appears to have let its long-term care safeguards expire last year.

If there’s a state you’d like to know more about, you can look at a state-by-state overview provided by the National Conference of State Legislatures. Their list, however, was last updated in early 2008 and is no longer accurate in some cases.

In our book, we discuss general privacy laws and concerns in Chapter 8. You can also let us know here if you are interested in a specific state, and we’ll try to move it up to the top of our research list.

In one, gene sequencing firm Complete Genomics announced that it had sequenced a whole human genome for $1,700 — a significant turn in the race to deliver an affordable, high-quality readout of a person’s entire DNA sequence.

In the other, members of a family known to carry a hereditary form of colon cancer discuss getting a genetic test — and some say they’d rather not know. “If it came back positive,” said one, “I think I would feel like it would be some kind of countdown.’’

People in the genetics world know that genetic information can provide valuable health insights now, and that many more will be found. To them, the idea of a full genome analysis is fascinating.

But out there in non-genetics land, others aren’t so sure. Many people continue to believe that DNA determines one’s fate, despite all the evidence to the contrary. For most of us, genetics is only one of several important factor in our health. But in the realm of ideas, the messages of Gattaca still hold sway.

That dictomy is what makes genetics so fascinating, and so difficult to bring to everyday life. The prospect of personal genetic knowledge hits people at a deeply personal, emotional level, raising issues of identity, free will, and one’s hopes for the future. Many people aren’t sure they want to throw a DNA readout into that mix.

In an excellent commentary last week, Hank Greely, an expert in the legal and social issues surrounding genetics,  pointed out all the ways that we’re not ready to handle genetic knowledge. I’d take it one step further — I’m not sure many people are ready even to discover their genetic makeup, let alone figure out how to handle the information once they have it.

When the low-cost genome race is won, it won’t ultimately be genomes that are sequenced, but people. Without more accounting for the human factor, that fact may leave those in the sequencing competition wondering where to go after they’ve crossed the finish line.

Some answers to this dilemma are out there, in the communities of people who’ve already made important decisions based on genetic information. We’ll talk more about some of those solutions in upcoming posts.

So the Genetic Information Nondiscrimination Act guards against most forms of genetic discrimination when it comes to your job or health insurance. But there were some other types of insurance that GINA didn’t touch – life, disability, and long-term care.

Regulating how personal genetic information is used in those areas is left up to the states. And trying to track what each state is doing is like herding those proverbial cats. State legislatures are usually considering multiple laws at once, and it can be hard to tell how a state’s laws regarding genetic discrimination may have changed.

The National Conference of State Legislatures made a valiant attempt to summarize each state’s position, and their online genetic laws list is the one that most people seek out. But it was last updated in early 2008 – an eternity in the genetics world.

And when it comes to California, it looks like things have definitely changed.

The NCSL list states that California “restricts discrimination based on genetic information” in all three areas of insurance – life, disability, and long-term care. That assertion still holds true when it comes to life and disability coverage.

But the long-term care protections mentioned by NCSL, which prevented long-term care providers from requiring genetic tests, were set to expire in early 2008.  (You can see the old version of the state insurance code by clicking here and scrolling down to Section 10233.1) There’d been some talk about maintaining them – and none of it apparently went anywhere.

I checked recently, just out of curiousity, and found that the earlier section of legal code (10233.1) had been deleted from California’s lawbooks entirely . There are new or revised sections of the life and disability insurance code covering discriminatory practices and underwriting on the basis of genetic testing. The revised long-term care section now doesn’t appear to discuss genetic issues (if reading insurance code is your idea of good times, click here and scroll down to Part 2, Chapter 2.6).

We’re certainly not lawyers, and if anyone knows more information, please let us know. We discuss the basics of genetic privacy and policy in Chapter 8 of our book.

But from the looks of these changes, Californians no longer appear to have previous genetic protections in the area of long-term care coverage. The old law didn’t guard against all forms of genetic bias when it came to long-term care. Still, it’s disappointing that in the same year that GINA succeeded at the national level, California took a step backward.

And just to be clear, we’re not trying to pick on NCSL. Keeping their list up to date would be a full time job. When I can, I’ll look at other states from time to time to see what’s changed.

Biobanks aren’t new, and some, such as Great Britain’s UK Biobank, are larger. But the new biobank is still noteworthy, both for its ambitions and the challenges it will face. If you are thinking about joining a biobank or genetic research project, you’ll want to pay attention to what is happening with this one.

With its focuses on Kaiser members, researchers will have access to participants’ health information. Since most common health conditions arise from a combination of genetics and “environment” (science-speak for non-genetic factors such as food choices, exercise habits, and air quality), being able to blend genetic information with health records is a coveted prize to many researchers.  The average age of biobank participants is 65, allowing researchers to look at genetics and health outcomes over a longer span of time. Diseases of aging, such as heart disease, will be a key focus of the project.

But this won’t be easy. It’s notoriously difficult to tease clear answers out of a thicket of thousands of DNA profiles and personal health records. The project has two years to pull all that information together in a usable way.

As with other reputable biobanks, participation in the Kaiser biobank is voluntary. If you are thinking about joining a biobank or other genetic research project, you can find some general information in Chapter 2 of our book. You’ll find specific information on protecting your privacy in Chapter 8.