Posts Tagged ‘Direct-To-Consumer Genetic Testing’
What is AccessDNA?
What is AccessDNA?
We are often asked why we founded AccessDNA and how we hope to help people. As a genetic counselor, I often get calls and emails from people located around the country looking for information about their genetic disease or that of a loved one. They may find my name in a directory at the National Society of Genetic Counselors website or they may find our website by doing a Google search and send me an email. But, either way, they usually reach out because they are having a hard time finding any relevant information about their genetic disease or finding a genetic counselor in their local area since there are so few of us practicing in the United States.
We believe access to credible information and genetic services is critical for individuals and their loved ones when faced with a genetic condition. Access to genetic counseling is especially important because genetic counselors have specialized training in assessing an individual’s risk to develop or pass on a disease or abnormality. We are also trained in the medical aspects of the disease, such as symptoms and characteristics, disease management and treatment, as well as the psychological implications of disease on an individual or family.
AccessDNA was founded to help people get guidance and support in this emerging and promising area of medicine. In an era where our knowledge of the genetics of both rare and common diseases, such as diabetes and heart disease, is rapidly advancing, and tests are being developed daily, everyone can use a little help understanding what this means for themselves and their family.
DTC Genetic Testing as an Effective Motivator?
Laura Hercher, MS, CGC did a wonderful job summarizing some of the main points of discussion at the two-day workshop on direct-to-consumer (DTC) genetic testing, which was co-sponsored by the Institute of Medicine and the National Academy of Science at The DNA Exchange.
As a follow-up, I would like to touch upon a point to which the represented DTC companies alluded a few times, as did some of the speakers: the use of direct-to-consumer genetic test results as an effective motivator for lifestyle change.
Most health professionals probably agree that there is limited clinical utility to most single nucleotide polymorphism (SNP) tests at this time. At most, they may argue, test results are informational but not medically relevant.
However, as DTC companies and other groups race to validate these SNPs as a better (or at least appropriate) indicator for multifactorial disease, I also wonder whether test results will also motivate individuals to make healthier choices and engage in proactive, preventative medicine.
Will knowing this genetic information be a more effective motivator than family history or known disease risk education? Or, are we just failing in our efforts to help doctors and families recognize and communicate familial and environmental risks? Does knowing this genetic information force people to face risks that they have been successfully avoiding?
We all know (or should know by now!) that to stay healthy, we should follow some basic practices: eat a well-balanced diet, exercise regularly, don’t smoke or do drugs, drink in moderation, etc., etc. We are told this by our doctors, people who play doctors on t.v., our moms, aunts and sisters, the media, celebrities; basically, everyone. But, have these guidelines become so redundant that they have lost their impact? Will knowing genetic information, and thus knowing how to personalize diet and exercise, make a difference? Or, will it, at times, provide false reassurance of low disease risk, and thereby have the opposite effect?
Although arguably not as important as the discussion of clinical validity and utility, the public health risks of providing this information directly to the consumer, or the lack of current regulation of the DTC market, I think the question of how direct-to-consumer testing will impact individuals’ commitment to a healthy lifestyle should not be neglected. In the end, will this information be as empowering as is speculated?
