By Kirell Lakhman
An NHGRI-led study has shown that patients who used direct-to-consumer genetic tests procured online “may be among the most motivated to take steps toward healthier lifestyles.”
"Understanding early adopters’ motives for seeking testing can be informative to physicians in managing patients who present with genomic profiles," according to results of the three-year study, which was led by Colleen McBride, chief and senior investigator of the Social and Behavioral Research Branch at NHGRI.
The research, published in Genetics in Medicine earlier this month, is also noteworthy in that the tests on which it is based were in no way regulated by the federal government. The study’s results should therefore serve to temper the American College of Clinical Pathology’s stance that such tests pose a threat to clinical pharmacogenomic tests.
To be sure, the NHGRI-led study says what is already widely known — that the data these companies provide have “no established clinical utility as yet.” But it also stresses that "direct-to-consumer availability of genomic testing profiles gives health consumers new health information.”
And according to Sample sister publication Pharmacogenomics Reporter, which covers the paper in its current issue, the research “may help healthcare providers better address the needs of those who use the online services of direct-to-consumer genomics firms.”
Industry groups, lawmakers, test developers, physicians, and patients should take away from this point the notion that individuals possess the foundational right to purchase a genetic test and the requisite intelligence and inquisitiveness to comprehend their results.
By extension, companies that sell the tests must be allowed to perform their service without the burden of costly and superfluous federal regulations.