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NIH Working on DTC Genomics Public Resource

WASHINGTON, DC (GenomeWeb News) – The National Institutes of Health is developing a website to be a consumer-level resource for the general public about direct-to-consumer marketed genetic tests, according Larry Thompson of the National Human Genome Research Institute.

The site will fulfill an effort begun by former NIH Director Elias Zerhouni, who wanted to give the public "a place where they could go when they wanted to understand" consumer genetic tests, said Thompson, who is chief of NHGRI's communications branch, at the Secretary's Advisory Committee for Genetics, Health, and Society's quarterly meeting yesterday.

Thompson said that the effort to create the resource currently has no funding and no dedicated staff, and it is being developed by a group of other trans-NIH staff, including himself, who have volunteered to spend time on this project and in partnership with the National Cancer Institute.

He said that the group conducted a study last fall about consumers and physicians about their knowledge of genetic testing and how often the subject of genetic tests comes up. The study involved ten focus groups with consumers and "in-depth" interviews with over 80 doctors.

The research included consumers stratified into groups ranging from those with no knowledge of genetic tests to those who had actually taken a genetic test. The group did not include, however, any consumers who had taken a direct-to-consumer genetic test.

"Most of the consumers were broadly aware of genetic testing but they knew very little about the details of them," said Thompson. "And when they were pressed for details, they got stuff wrong all over there place. There really is not a very deep public knowledge about" DTC genetic tests, he said.

Thompson noted that most consumers were concerned about privacy and confidentiality, but most also were not aware of the Genetic Information Nondiscrimination Act, which was passed to protect people's privacy and to protect them from discrimination based on genetic information. The consumers were most concerned about insurance companies and employers obtaining or misusing their genetic information.

Most consumers also said that they wanted the government to provide unbiased and reliable information about these tests, according to Thompson.

Through a number of interviews with doctors, Thompson continued, the primary finding was that "genetic testing really doesn't come up much in their practice," and most patients "wouldn't know how to interpret the results of genetic tests."

He added, "Many of the docs didn't know enough about the kind of genetic tests that are out there, they didn't have classes in medical school (about them), and really they wanted us, the government, to provide a list of approved tests."

The study suggested that the public resource needs to be "basic and practical, all about genetic testing, and very straightforward," Thompson explained.

"We also think the site needs to be engaging," he continued, adding that a centerpiece for the site could be a series of video blogs that would give consumers information about genetic testing and risk in a swift way.

Thompson also said a challenge for the web resource, aside from its current lack of funding, is that it will need to make genetic information accessible. "We'll have to speak in a way that my mother can understand it," he said.

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