We read with interest the article (“Promotion offering DNA test kits to Ravens fans to be rescheduled,” Sept. 17) regarding the postponed Ravens promotional direct to consumer (DTC) DNA test kit giveaway. While we were pleased to see that Maryland state officials intervened, the event may still take place in the future. And we believe that it is critical for consumers to proceed with caution before participating in this type of genetic testing without informed consideration of its possible consequences for medical decision-making. Furthermore, consumers should be aware of what their sample could be used for and with whom the sample or information derived from it will be shared. Currently, there are no regulations for how DTC companies manage, share, sell, buy, conduct research, ensure accuracy or responsibly interpret the results of the samples they test.
Genetics professionals integrate information regarding family history, lifestyle and medical and genetic testing to determine the risk to a patient of developing or having a medical condition. Interpretation of DNA results outside of the health care context is challenging; DTC companies and consumers can over- or underestimate or otherwise misinterpret their true health risk. In this instance, the four tests being offered by ORIG3N have very low predictive value for any individual since there are many factors that contribute to the likelihood of developing a problem. For example, a DNA test that tells someone they are at a modestly lower risk of vitamin D deficiency compared to other individuals does not replace the need for consideration of many other factors, including measurement of vitamin D levels (which, if low, require supplementation). Conversely, some testing may cause a false alarm regarding perceived high risk, when in reality the actual risk of a particular disease is still incredibly low. Furthermore, other DTC testing can provide information about family relationships, and there are increasing examples of individuals who were not prepared to learn unexpected information.
There is still much to learn about the human genome and the interpretation of genetic testing. This uncertainty is of special note when the results have a potential impact on health. For these reasons, DTC genetic testing interpreted without knowledge of family history and co-existing medical and environmental variables can be confusing, difficult to understand and inaccurate.
As genetics professionals, we are delighted that the Ravens are bringing awareness to DNA and genetic information, and we are advocates of genetic education to the public. As advocates, we want our Ravens fans to be well-informed about these opportunities. To this end, we believe consumers should partner fully with their health professionals for appropriate use and interpretation of genetic tests. Consumers should also have knowledge of where their DNA sample is being sent and how it will be used, even if it is a free test.
Dr. Ada Hamosh, Gretchen MacCarrick, Natalie Beck, Carolyn Applegate, Dr. Joann Bodurtha, Dr. Julie Hoover-Fong, Jackie Britton, Weiyi Mu, Dr. Alan Shuldiner, Miriam G. Blitzer, Dr. Antonie Kline, Toni I. Pollin, Alena Egense, Kristin A. Maloney, Shannan Dixon, Dr. Carol Greene, Dr. David Valle, Carol Greider, and members of the Greater Baltimore Genetics Group.
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