With each passing day, technology gets us closer and closer to a reality where we can test not only our family ancestry with the likes of 23andMe, Ancenstry.com, MyHeritage or Helix, but our disease propensity as well. A simple finger prick or cheek swab can inform us what could come to be if the right combination of factors play out in our lives. But the risks and results of such tests are not always what they seem. In fact, there is a lot about genetic tests that most people don’t know.
As we become more comfortable with at-home DNA testing kits and allowing companies to assess our biological makeup, the market continues to shift in a variety of ways including the types of diseases and disorders that can be tested, how accurate the tests are, and the amount of information shared – which can include selling your data to third parties. And this should concern us for a number of reasons ranging from blatant privacy concerns to subtle discrimination by insurance companies to emotional distress caused by unexpected results (23andMe learned this during the holidays) and misunderstood results.
Thus, before you mail in that DNA sample, here are 10 very important things for you (and your family) to consider.
1. Results are NOT a diagnosis. What the results provided tell you is your risk– or the likelihood and impact of you getting a disease or disorder. Before taking results too seriously or making ill-informed decisions based on insufficient information, consult a medical provider.
2. Currently available tests are not as advanced – or accurate – as they often claim to be, and don’t reveal all the things patients may want them to. While genetic tests are presently able to determine thousands of diseases and disorders, in-home tests are limited by the FDA to about 10 diseases and conditions.
3. Tests being marketed directly to consumers can have a high propensity for false positives, implying a person has something when in reality they do not. Results can also produce false negatives, implying a person does not have something when in fact they do.
4. Biomarkers and genetic testing for cancer, diabetes, heart disease and other chronic diseases will not introduce the same level of intergenerational stress and concern for families as neurological and degenerative conditions like dementia. And despite media hype and flashy press releases, there is currently no single test or tool that can accurately diagnose Alzheimer’s disease or predict with 100% certainty who will develop it – or any of the similar neuro-degenerative diseases.
5. We know smoking and obesity kill millions of Americans each year, and yet those behaviors persist. Thus, many believe few will change personal behavior based on DNA test results. Although, findings coupled with personal choices and belief systems could alter the way some individuals, families and communities prepare for disease. But what behavior will certainly change, is how insurance companies, care providers and employers provide and pay for care based on results.
6. At present, long-term care insurance, disability insurance and life insurance can prohibit you from coverage if your genetic tests show a propensity for diseases and disorders. The societal implications of such discrimination could greatly determine who does and does not receive care based simply on profile risk alone.
7. Congress took a major steps toward protecting patient privacy for genetic testing by passing the 2008 Genetic Information Nondiscrimination Act (GINA), which prevents an employer or health insurer from discriminating against Americans based on genetic information.
8. You should have major concerns about your privacy. Since 2017, when 23andMe partnered with GlaxoSmithKline (GSK), the world has known that genetic testing companies and pharma are linked. In this particular case, 23andMe gained a $300 million investment, and GSK – along with six other pharma companies 23andMe made deals with – get consenting patients behavioral, health and genetic information.
9. The obvious goal of genetic test companies partnering with pharma is drug R&D and drug targeting to specific individuals. But with many not knowing that their spit sample or blood test results are being sold to third-parties for large sums of money and targeting, privacy issues are certain to mount in the coming years as disease knowledge gets more accurate and more serious.
10. We’re going to need a lot more genetic counselors to help with the new knowledge and care plans. Without cures or highly effective symptomatic treatments to go hand-in-hand with genetic testing, the risk and reward of results will certainly take a toll on individuals, families, health care markets and communities.
Perhaps it is true that ignorance is bliss. But if you disagree and decide to participate in genetic or ancestry testing here is some added information and advice from the Mayo Clinic that might help you and your family through the process.