Four MORE Questions to Ask Before Taking an At Home DNA Test
Genetic tests are big business. Last week I shared two important questions you should ask yourself before taking a test.
First, how would you react if you found out your parents, weren't the people you thought? It's rare, but it has happened.
Second, what would you do if you found out you carry a potentially deadly gene you could pass on to children? Or if a gene you have puts you at much greater risk of developing certain diseases? It's important you talk to family and medical professionals to prepare you for the results.
Those aren't the only things to consider. Because this is such a new field, a lot of things still need to be worked out. Here are some additional questions you should ask.
Is my genetic information used for just my test, or anything the company wants? Believe it or not, there is no “acceptable industry standard” way of handling what genetic testing companies learn from you. Some companies retain the right to keep your DNA on hand to conduct more tests in the future... for their own research purposes. Your information may be used in clinical studies to make medical treatments or develop new diagnostic tests. Even though your genes might be the piece they needed for the breakthrough, you often sign away any rights to future revenue or royalties that information provides.
Read the terms of service on how your information will be used. You should have the choice to opt-out of other studies. You should also find out if your DNA is stored for future uses, or if it's destroyed after running the tests you paid for. I was OK with companies using my information to develop new treatments, but I might feel differently if those companies priced those treatments so high only the rich could afford them.
Is my genetic information linked to my identity? If it's stored for my future use, or used in other studies, what identifying information is kept with that sample? Hacking into companies to get customer credit cards and bank accounts have become so routine, we barely notice anymore. But what if a genetic testing company was hacked and your personal profile was laid bare for the world?
Once again, read the terms of service. Find out what information that company is going to provide to other companies that they might share your DNA with. Ideally, your information should be anonymized if it's shared with outside research organizations. The testing company should also guarantee they keep your genetic information stored separately from your personal contact information. That way if they were hacked, theoretically nobody would be able to pick out your specific profile.
Who has access to my DNA results? There's a law referred to as HIPPA, the Health Insurance Portability and Accountability Act. That law protects your medical information and keeps it private when handled by doctors, hospitals or insurance companies.
However, TESTS you purchase directly, without a prescription, are NOT protected by HIPPA. That means your genetic information could be shared with anyone the testing companies want, or anyone who might pay for them. Police have used it to locate killers (a good thing) but insurance companies could use it to exclude anyone with a genetic health risk (a bad thing).
Are you prepared for genetic discrimination? In 2008 the Genetic Information Nondiscrimination Act (GINA) was passed to prohibit employers and health insurance companies from using your genetic information when hiring or making health insurance decisions. HOWEVER, that same law does NOT apply to companies that provide disability insurance, life insurance or long-term-care insurance. That means companies that sell their information to outside vendors, could theoretically sell your results to a life insurance company. Then that company could use the information to raise your rates, cancel your insurance or even deny you from getting coverage in the first place.
If privacy is important, delete the account with your genetic information after you've downloaded the results. Just make sure it's a company that doesn't store your DNA for future testing AND that doesn't directly connect your name with your results.
A BONUS WARNING for our online readers.
Stop doing business with any company that uses your results to try and get you to buy supplements, vitamins or medical procedures to treat, cure or prevent disease. Always talk to your doctor before considering any medical procedure based on the results of a DNA test.
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