Every day we see new technology and research that improves the quality of healthcare. However, it can be difficult to sort out the truth from misinformation. This is the case with genetic testing, which is now widely available direct-to-consumers (DTC) through companies such as Ancestery.com and 23andMe.
According to the World Health Organization, genetic testing “present[s] an opportunity for individuals to become informed about their genetic predisposition to disease, and for couples to be aware of the possible genetic characteristics of their unborn children.” In addition to testing if someone is at an elevated risk for certain diseases, the tests can also reveal information about an individual’s ancestry.
Here’s what you should know before consenting to testing:
- Positive results can invalidate certain insurance coverage. The Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employers and health insurance companies from discriminating against you based on results of genetic testing. Health insurance companies cannot use testing results to deny you coverage or increase rates. However, this does not apply to disability, life, and long-term care insurance in some states. We recommend that you secure these types of insurance prior to testing.
- Have a professional interpret your results. Although it’s tempting to do an at home test, experts still recommend you go to a geneticist for genetic testing, as it is easy to misinterpret results. Recent research found that people who use DTC testing tend to overestimate the comprehensiveness of the testing and may incorrectly interpret a lack of positive results as meaning they have no genetic risk.
- Not everyone is a good candidate. “A good candidate for testing has to be psychologically ready to deal with a high-risk diagnosis,” says genetic counselor Christen Csuy. Individuals who have a family history of breast cancer are often recommended for testing for the BRCA1 and BRCA2 genes. Further, children who have developmental delays or multiple birth defects, and adults who have several complex health problems may also be recommended for testing.
- Privacy policies differ by company. Before consenting to genetic testing, make sure to read the company’s privacy policy. While GINA provides some privacy regulations, there are exceptions and some experts say that current laws do not go far enough in protecting the privacy of consumers.
- Law enforcement may be able to use results of genetic testing. You may have recently heard of the Golden State Killer who was caught after a relative of the killer underwent genetic testing and posted their results online. Remember, when you receive genetic testing, you are also sharing genetic information about your relatives.
- Results can be used to inform new treatments. If you opt-in to have your information shared with research partners, then results of your testing can be used to further research into disease and disability. Genetic testing results are now being used in precision medicine, which involves tailoring treatments based on an individual’s genetics. Some experts are conducting genomic research to develop new therapies for the treatment of neurodegenerative disease, neuropsychiatric disease and cancer.
For more information about genetic testing and to find a reputable testing facility, contact Better Health Advisors.
