Testing for one’s genetic risk has become increasingly popular in recent years with the mapping of the human genome. Now, you have the opportunity to know if you carry the BRCA genes, or know your risk for Alzheimer’s, other cancers, heart diseases and other diseases and traits, and even one’s genetic ancestry, based on the presence of certain DNA segments in your genome.
Direct-to-Consumer (DTC) DNA testing, also known as personal genome services, allows a person to get his genetic profile just simply by swabbing one’s cheeks or spitting into a test tube and sending the sample back to the genetic testing company. In a few weeks you have your results back in print and at a password-controlled website. Pretty nifty, right?
Well, this New York Times article writes that the entire DTC industry is more “hype than hope”, and can throw people into the wrong decisions simply by trusting in data that is incomplete and inaccurate.
“It’s important to separate hope from hype,” Dr. Jennifer House, president of the March of Dimes, said at a recent meeting of its national communications advisory council. “Direct-to-consumer genetic testing is a buyer-beware market. Consumers need to be very, very cautious.”
Based on the article, here are seven arguments why the current DTC genetic tests are “a slippery slope”:
1. Most gene tests do not pass the criteria for reliability. (More after the cut.)
2. Many complex diseases have varying degrees of penetrance, so a genetic mutation associated with a disease does not necessarily mean the disease will develop or become as severe. Environment and lifestyle also factor significantly in complex disease, so the chance that a disease would be expressed in a particular person would be unpredictable, and at best an estimate of risks.
3. Lacking a harmful gene that is already known, like a gene linked to breast cancer, does not mean you will not have that disease. Again this is especially true for complex diseases because there are so many genes that could be involved in a disease, and we have not identified all the possible genes and gene-combinations for each disease.
4. Of the 20,000 or more genes in the human genome, Direct-to-Consumer DNA tests only examine a fraction of those genes.
5. There is a relative shortage of counselors who can explain the results, and if need be, guide a consumer through the decision-making process that results after knowing one’s risks and profiles.
6. Privacy and consent for further use of one’s genetic material are vague. “Your DNA might be sold, shared or used without your consent for testing and research.”
7. No federal law provides oversight of the DTC genetic testing companies.