The Genome Book

Medical records?

In 2004, the U.S. Surgeon General declared Thanksgiving as Family History Day. What better time to learn about the health history of your family than when so many members are gathered?  

We tend to think of genetics as high tech (and often expensive), but a family health history is a simple, low-cost activity that could become one of the most powerful tools in your personalized medicine tool box.

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(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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Any woman who’s considered having children knows that age isn’t on her side. Growing older not only makes it harder to have a baby, but also raises the risk that a baby might be born with a genetic disorder. Now, as it turns out, it’s becoming more clear that a father’s age matters as well.

Researchers have been trying to discover why older fathers, usually men in their 50s or above, are more likely to have children with certain genetic disorders. Now, a team of researchers have found a possible reason — Read more »