Cost, privacy worries deter some
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SAN DIEGO -- The Feb. 28 deadline is approaching to enroll in a study of how personal genetic makeup affects health, but there's plenty of room for last-minute applicants.
Enrollees will get personal genetic testing, along with genetics-based counseling on how they can improve their health. The testing can show, for example, whether a person has genes associated with an increased risk of heart disease, cancer, or diabetes.
The 20-year study is offered by the Scripps Translational Science Institute, a unit of Scripps Health.
The study, called the Scripps Genomic Health Initiative, will provide personal genetic scans and detailed analyses of participants' genetic risk for more than 20 diseases that can be influenced by lifestyle changes, such as quitting smoking, dieting and exercising.
Scripps was prepared to accept up to 10,000 enrollees when the study was announced last October. But so far fewer than 4,000 have signed up, said Dr. Eric Topol, program director of the translational science unit. There's enough to perform a valid study, Topol said, although he would have preferred more people.
Topol said the cost of enrolling, close to $500, deterred some. Moreover, people are worried about what they -- or their insurance companies or employers -- might find out.
"People are afraid of the data, afraid they might have some genes they don't want to know about," Topol said.
Some protection is provided by the Genetic Information Nondiscrimination Act, Topol said. measure, signed into law last May by then-President George W. Bush, makes it illegal to discriminate in employment and health insurance based on genetic information.
However, GINA, as the act is known, doesn't go far enough to reassure people they won't be victims of discrimination in life or long-term disability insurance, Topol said.
"There's not been a precedent yet for discrimination based on genomic data. It would be nice if we had a GINA bill so that privacy is never an issue."
Given the privacy implications, Topol said mandatory genetic testing is not likely. So voluntary cooperation is essential to advancing health by knowledge of genetics.
Topol said he hopes people will become motivated to allow their genetic information to be read if studies like this one show effectiveness in improving health with knowledge of their own genes. And if that effectiveness is demonstrated, it is possible that the testing can be subsidized for those unable to pay, he said.
No blood draw is involved to provide the DNA, which will be taken from a saliva sample.
Call (858) 554-5736, or visit: http://www.navigenics.com/partners/scripps/.
Co-sponsors are Navigenics Inc. of Redwood Shores, Affymetrix of Santa Clara, and Microsoft Corp. of Redmond, Wash.
Contact staff writer Bradley J. Fikes at (760) 739-6641 or bfikes@nctimes.com. Read his blogs at bizblogs.nctimes.com
Posted in Health-med-fit on Sunday, February 15, 2009 12:00 am Updated: 12:31 pm. | Tags: H.genetesting, Health, News, Z.google.health
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