The Genome Book

(Note: This post is part of a series on gaps in genetic anti-discrimination laws. In the United States, the Genetic Information Nondiscrimination Act guards against most forms of genetic discrimination when it comes to your job or health insurance. But laws protecting other types of insurance, such as life, disability, and long-term care, are left up to the states. Every week or so, we’ll pick a different state off the map and do a legal review.)

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.

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Two headlines regarding genetics hit the wires recently, and together, spoke volumes.

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.’’

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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.

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In California, one of the state’s biggest health care providers has teamed up with one of its most important research centers to open a powerful new genetic biobank. Kaiser Permanente and the University of California, San Francisco will study the genomes of more than 100,000 Kaiser members who donated their DNA, funding the work with a $25 million grant from the National Institutes of Health.

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.

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