Genetics Websites from Harvard University and the World Health Organization

by Dr. Hsien-Hsien Lei
Posted July 28, 2007 in DNA Testing, DNA in General, Eye on DNA Headlines

Two comments this week led me to great genetics websites that I think you should visit.

Harvard University’s Personal Genetics Education Project

Coming out of the Wu Lab at Harvard Medical School, Dana Waring is in charge of the Personal Genetics Education Project. This website will be particularly useful when personal genome sequencing becomes widely available. To prepare yourself, learn about the possible benefits and risks as well as those who are currently involved in developing genetic sequencing technology.

Dana had this to say about the Personal Genetics Education Project:

The pgEd is about public education and engagement on personal genetics. I am a member of a basic research lab at Harvard Medical, but my area is the ELSI (ethics, legal, and social issues) side of personal genetics. I think we all believe that the widespread lowcost sequencing is coming soon, and that its really time to get ready!

Our project is aimed at education/outreach to high school and college students, curriculum development, but we are also hoping to engage some of the other stake holders (insurers!) on the topic. I really think that this technology is squared aimed at the generation who are 5-10 years away from being independent health care consumers.

World Health Organization’s The Genomic Resource Centre

A question from Kathy F about the accuracy of genetic tests got me wondering about general quality assurance issues. The WHO Genomic Resource Centre has a very detailed section on Quality & Safety in Genetic Testing: An Emerging Concern. According to the introduction, the WHO has been considering the implications of genetic testing on public health since 2003.

Here are three elements proposed by the WHO to determine the validity and utility of a genetic test:

• Analytic validity refers to the ability of the laboratory test to distinguish the trait that it was designed to measure (in the case of genetic testing, the presence of an abnormal gene variant)
• Clinical validity describes the test’s ability to predict a given clinical outcome.
• Clinical utility indicates whether a test results in information that can be used to develop a clinical intervention.

Last year, the Government Accountability Office (GAO) reported to the Senate that home DNA tests are misleading, medically unproven, and/or ambiguous. But while a great attention has been focused on direct-to-consumer genetic testing, that doesn’t mean in-laboratory tests are necessarily always accurate and reliable. If you have any doubts or questions about genetic test results, never hesitate to ask for reassurance from your genetic counselor and/or the laboratory that performed the test. Don’t forget that you can always take the test again for confirmation just as you can always ask for a second opinion on any medical diagnosis!

Tags: genetics, genes, dna, genome, genomics, personal genetics

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Comment by KathyF

2007-07-29 20:08:52

That was interesting reading; thanks for posting. I remember now why I have good reason to believe the test was accurate: My 17 and 29 CAG counts matched with one of my mom’s, the 17. I did not inherit her 41, so must have got the 29 from my dad. Since we knew my mom’s CAG count, and knew one of mine had to match one of hers, it makes sense that the test was accurate, at least in that one gene.

I just wish we’d had my grandmother tested. She had a “mild” case of HD, in fact she lived to be 80. I suspect my mom’s gene may have been a mutation. But we’ll never know now.

It’s just survivor’s guilt that makes me wonder about things like mistakes in genetics tests!

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Comment by Hsien

2007-07-29 20:17:33

Thanks for coming back and letting us know! I have been thinking about you since you left the last comment about your worries. *hugs*

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Comment by Blaine Bettinger

2007-07-30 01:05:06

Hsien,
Ms. Waring recently agreed to do an interview for The Genetic Genealogist, so if you or any of your readers have any questions about the Personal Genetics Education Project just let me know! It looks like a great project.

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Comment by Pat Washburn, OrganizedWisdom.com

2007-08-05 21:49:23

Thanks for this post! I’ve included it in the Medicine 2.0 Blog Carnival at The Health Wisdom Blog.

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Comment by Hsien

2007-08-06 08:47:59

Thanks, Pat!

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Pingback by The Genetic Genealogist - » Interview with Dana Waring, A Founder of the Personal Genetics Education Project

2007-09-06 08:02:02

[...] this field. You can see a few recent mentions of the pgEd from other members of the DNA Network – EyeonDNA, and [...]

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Pingback by Eye on DNA Headlines for 7 September 2007

2007-09-07 12:46:43

[...] Genealogist has an interview with Dana Waring of the Personal Genetics Education Project. (I wrote about the pgEd in [...]

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