Are you interested in testing your genes for any reason? If you followed my blog you would know that there are some good reasons to do it and how to go about getting it done.
Now you decided to get tested, before you take the last step you need to consider implications of the test results. Getting your genetic risk factors determined sounds great but it can mean that you need to disclose them to your insurer when applying for coverage or your insurance policy may be invalidated. Australian insurers actually ask you about genetic tests such as provided by 23&me or Counsyl.
After a careful consideration you decided to get tested, talked to a doctor and send off your sample. What happens now? Your sample gets to the lab and is processed, at the end a report is created and send back to you or your doctor. What happens to the data that has been generated during testing? The genetic information created is considered medical information in the USA as well as in Australia, and as such it is protected and cannot be accessed without your consent. This is an important point for consideration if you carry a disease causing mutation. This genetic information is not just private but also familial. This means that your family members may carry the same change in their DNA. Privacy rules prevent the laboratory or your doctor from disclosing your information to anyone. The doctor might recommend that you share the information with your family. On the other hand the family members might not want to know and this is their right. If you are not sure how to handle the situation please discuss it with your doctor or genetic counselor. There is no a right and wrong answer to this question, each situation is different.
On the other hand consider that when you get your ancestry tested and willingly share this information on genealogy networks you openly make your most personal information public. This was one of the ways how researchers were able to trace owners of some of the 1000 genomes. So be responsible about it the same way you are with your social security number or any other personal information.
A different issue is what about the sample you provided, is it protected from unauthorized use? This sample and your genetic information is valuable for researchers for various reasons. And now we come to an interesting point. Your samples cannot be used for any research if you have not signed an informed consent for such use of your sample. Do you recall signing an informed consent stating that your sample will be used for research purposes? Do you know for what purposes it is going to be used? Were you informed how the sample will be used? Could you get your test done without signing this consent?
I can hear the questions coming up – Should I sign the consent or not? This is a personal decision. Your sample can allow the lab develop and validate newer tests later on, if you carry a particularly rare mutation. On the other hand, there are repositories of samples that are accessible to non-profit and commercial institutions. The only problem is that not all mutations are present in samples held by those repositories and diagnostic labs tend to use their in-house samples to fill in the gaps when developing or validating a new test. There is no problem with this if they asked your permission to use the sample you provided for this purpose. So if you are concerned about your genetic privacy make sure you find out what will happen to your sample and information after the testing is completed.
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