Decoding the human genome has provided scientists with innumerable insights into not only known genetic diseases but also disorders like cancer. According to the New York Times, about 700,000 Americans have had their genomes fully sequenced. In some cases, women who have a family history of breast cancer have chosen preemptive mastectomies based on genetic test results. Knowing their genetic makeup enabled them to avoid developing breast cancer. For patients like them, genetic testing is a godsend.
For others, genetic testing causes significant concern.A company called 23andMe, which is based in California, provided genetic tests to consumers that sent in a swab containing their spittle. Now, 23andMe faces a class action lawsuit alleging that its “Personal Genome Service” had no clinical basis. Some people have received incorrect results from 23andMe. For example, Lukas Hartmann, founder of Spacedeck, published an article detailing how 23andMe’s algorithm had incorrectly suggested that he might die of muscular dystrophy. Even more disturbing, 23andMe compiled its data into lists that it has sold to the scientific community and to other unidentified sources.
Genetic Testing and Insurance
A federal law called the Genetic Information and Non-Discrimination Act (GINA), passed in 2008, prohibits discrimination based on genetic information by both employers and health insurance companies. GINA does not, however, apply to life, long-term care and disability insurance, which means that these types of insurers can deny coverage or increase premiums based on genetic test results. Someone living in California who carries the genes for a genetic disorder like Huntington’s Disease could be denied private disability payments if he develops the disease and loses the ability to work (click here for specific information about California disability insurance).
Even more disturbing, scientists can reconstruct a person’s identity from an anonymously submitted genetic sample. Research published by a team of American and Israeli scientists in 2013 showed that simple, widely available Internet databases could be used to establish genetic identity. 23andMe was not only testing people’s genes but also marketing the results as part of packaged lists. Until Congress or California legislators expand GINA protections, workers have no protection from denial of disability coverage or benefits.
Should People Avoid Genetic Tests?
Before agreeing to genetic testing, subjects should ask themselves some important questions:
Why do they want to know?
Activist and celebrity Angelina Jolie underwent a voluntary double mastectomy because she carried BRCA1, a gene associated with breast cancer. Her mother had died of ovarian cancer, and an aunt died of breast cancer. In Jolie’s case, there was a compelling reason to know whether she carried BRCA1. If no family history of disease is present, then testing can be unnecessarily stressful.
Could they deal with bad news?
People should ask themselves whether they want to live with the news that they may have genes for Alzheimer’s, cancer or other types of illnesses. It’s a good idea to obtain counseling before undergoing a genetic test.
Do they understand what the tests mean?
Genes don’t always guarantee certain results, which makes genetic testing a probability game. Having the gene for Alzheimer’s doesn’t always mean that a person will develop the disease.
What if the results are wrong?
Lukas Hartmann doubted his probability of developing muscular dystrophy. He did further research and found that because the muscular dystrophy mutations were present on two different genes, which meant that although he could pass them onto children, he wouldn’t develop muscular dystrophy. Unfortunately, others may not do further research, or they may not have Hartmann’s ability to mine through scientific research. It would be tragic to base significant life decisions on an incorrect test result.
Wait and See
Genetic testing and associated civil protections, like the right not to be denied disability insurance, are only in the beginning stages. Until tests become more accurate and more is known about the correlation between genes and disorders, most people should avoid the expense of undergoing a legitimate genetic test. Also, consumers should be wary of companies like 23andMe, which promise a sophisticated test result for spit sent through the mail and a $99 check. Such tests are fun for checking ancestry information, but they’re not sophisticated or accurate enough to become the basis for profound life decisions.