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Vidyya, from the Sanskrit "vaidya," a practitioner who has come to understand the science of life.

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Back To Vidyya Donate Your Genetic Material

For A Good Cause?

The 01 August 2000 issue of the New York Times contains a front page article on a small, California company, DNA.com. The company is a start-up led by no less than the famous James D. Watson, the discoverer of the DNA double helix, and invested in by no other than James H. Clark, founder of Netscape, is asking for over 100,000 volunteers to donate their DNA. The company hopes to find genes that cause disease. Those individuals who are truly altruistic and want to do their part for medical science can donate their genetic code to the "DNA Gene Trust."

A visitor/volunteer to DNA.com's Web site will go through a registration process that includes a simple questionnaire. After filling out the questionnaire, registrants are told they will be notified if they fall within the particular genetic profiles that the company is currently seeking. Each person is notified several times that they may opt out of the project at any time.

The company plainly states that the volunteer's information may be sold to researchers. While every effort for the protection of the individual's privacy appears to be in place, the site acknowledges that, like all Internet sites, it could be vulnerable to hackers.

The study of wide scale genetic data is unprecedented and as such, there are ethical and privacy questions that go with the project. The loudest complaint from pundits, is that the information, if not kept confidential, could be used to deny the volunteers or their family members insurance or employment.

Not everyone who offers their DNA to the company will be accepted. Only those patients who fit a particular genetic profile are needed. If the patient fits the profile, they can donate their blood (and hence their DNA) at home, work or local laboratory. DNA.com will try to make the donation process as seamless and hassle-free as possible.

DNA.com's mission is to locate the groups of genes that may be responsible for such diseases as scleroderma, schizophrenia, heart disease, breast cancer, autism, and type II diabetes to name a few. Though some genetic components of these conditions have been identified, scientists have long postulated that the illnesses are caused by groups of genes in interaction with the environment. Having a large genetic database may help to pinpoint the causes of common conditions that have so far alluded a definitive cure.

Other companies are following suit. Initial stock offerings in the last two weeks for similar companies included: decode Genetics, which is making a database using medical records and DNA samples from most of Iceland's 275,000 people; and Gemini Genomics, a British company that has DNA samples and medical records from thousands of pairs of twins.

DNA.com is also owned in part by Healtheon/WebMD who will help in the patient recruiting process.

It is the hope of many, small pharmaceutical companies that projects like the one at DNA.com will result in decreased research costs. If DNA.com is successful, their "Gene Trust" will provide information on groups of people that companies would have had to recruit themselves. The project could save the pharmaceutical industry millions of dollars.

You can visit the DNA.com Web site at DNA.com.


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Editor: Susan K. Boyer, RN
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