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BETHESDA, Md.—Two years ago, two National Institutes of Health organizations, the National Human Genome Research Institute (NHGRI) and the National Cancer Institute (NCI), teamed with Group Health Cooperative in Seattle and Henry Ford Health System in Detroit to investigate the interest level of healthy, young adults—between the ages of 25 and 40—in receiving a new genetic test for eight common conditions, three of which are cancer-related.
Called the Multiplex Initiative, the study is also looking at how people who decide to take the tests will interpret and use the results in making their own health care decisions in the future. According to Geoff Spencer, a public relations specialist for NHGRI, that project is now winding down so that it can get on to analyzing its data fully.
The test at the heart of this research is being used is designed to yield information about 15 different genes that play roles in lung cancer, colorectal cancer, malignant melanoma, type 2 diabetes, coronary heart disease, high blood cholesterol, high blood pressure and osteoporosis.
The study was originally intended to offer a total of 1,000 participants who meet the study's eligibility requirements with a chance to take free multiplex genetic testing. According to a commentary paper published in the August 2008 issue of Nature Genetics, authored by Colleen McBride of the Social and Behavioral Research Branch of NHGRI and colleagues, the study had by that time approached more than 4,000 people and had a goal of accruing 500 who would receive the multiplex test. In addition, the researchers had we have completed over 2,000 baseline surveys designed to gather information on how these individuals seek out health information, their beliefs about the role of genetics and behavior in the cause of common health conditions, and their perceptions about their own health.
In the article, "Putting science over supposition in the arena of personalized genomics," the researchers wrote, "The current climate of vigorous debate is extremely useful for framing research questions and setting rigorous standards for evidence when evaluating the value of genomic discovery for public and clinical benefit."
However, they added that the field also has now entered a period in which "only rigorous experimentation can provide the types of information needed to determine whether genetic susceptibility testing should become part of the accepted standard of care. There is a real danger in plunging forward into widespread testing without first performing the kinds of studies described here; doing so will not inform and advance the field."
"Worse yet," they concluded, "it has the potential to yield a situation where technology alone will drive the market, resulting in products that are not responsive to public health priorities, are limited in reach, and are without benefit to the individuals and populations in greatest need.