Friday, March 19, 2010

Genetic Testing Registry Available in 2011

Since I was just writing about getting genetically tested to find the cause of my hearing loss, I was happy to see this news item about the National Institutes for Health announcing a Genetic Testing Registry. You can see the site, which the NIH hopes to be fully operational in 2011, here.

The Genetic Testing Registry will be a place for consumers, health officials, doctors, researchers, and others to find out information about the availability of genetic testing, what types of genetic tests are available, and laboratories in their area. It will also "[f]acilitate genetic and genomic data-sharing for research and new scientific discoveries."

According to their web site, there are currently 1,600 genetic tests available but no single resource to find out information about them. The site will not publish individuals' genetic test results.

I think this is going to be a useful resource once it gets off the ground. If I haven't gotten genetically tested by 2011, I hope I can turn to this site for information.

2 comments:

  1. Thanks for posting this! Very cool! :-)

    ReplyDelete
  2. When we consider genetic testing, we should ask what the information will be used for in the database. Will it be used for useful research that helps d/Deaf people, or will it be used to refine tests that eventually can be used to diagnose and abort deaf children? Probably all these and other uses.

    I'd love to know what kind of genetic deaf genes are in my family, but not at the price of providing data to abort future babies. There are too many ethical considerations involved, and too much ignorance in people at this time.

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