Who Owns A Twins Genetic Information ?
Who owns a twins genetic information is a question asked by many identical twins. Since the genomes would basically be identical, if one identical twin has their genome tested, the results are out there to be discovered about the other twin. This question was tackled by identical twin researchers Arielle Schilit Nitenson, a PhD student in neuroscience at Brown University, and Samantha Schilit a PhD candidate at Harvard specializing in human genetics. After Samantha had a full genome DNA test, the twins disagreed about the privacy of the results. This lead to them writing this scienfic journal article in The Journal of Genetic Counseling titled “My Identical Twin Sequenced Our Genome”.
The Abstract of the journal article: “With rapidly declining costs, whole genome sequencing is becoming feasible for widespread use. Although cost-effectiveness is driving increased use of the technology, comprehensive recommendations on how to handle ethical dilemmas have yet to reach a consensus. In this article, Sam shares her experience of undergoing whole genome sequencing. Despite the deeply private nature of the test, the results do not solely belong to Sam; her identical twin sister, Arielle, shares virtually the same genome and received results without a formal consent process. This article explores their parallel experiences as a way of highlighting the controversial ethics of a private test with familial implications.”
Samantha, studying genetics didn’t realize that her sister would have an issue with her getting the full genome testing. While Samantha wanted to know if she had any genetic health issues or issues that would affect a pregnancy. However, her sister, Nitenson wasn’t as eager to learn what possible mutations might show up in their DNA, and she was worried security and access to the data. She didn’t want to risk any discrimination that could happen by an insurance company or other company. Also, most of the testing companies sell the information to drug companies and Nitenson did not want her information available. The Genetic Information Nondiscrimination Act of 2008, doesn’t cover life, disability, or long-term care insurance discrimination.
The sisters worked out the details of the test results in a way that both could work with. They are working together to decide what information is disclosed to family members. Fortunatly the twins are in good health, without major genetic issues. What if the testing had uncovered a genetic abnormality that would affect them in later life. What responsibility is there to disclose information to other family members?
This article focuses on identical twins, but will continue to be an issue with families in general. There will always be family members that don’t information out there that could be linked to them. If a close relative has tested, fears are police will use the data to locate people involved in investigations. Insurance companies could link a brother with a genetic disease to another brother that hasn’t tested. Family members have no rights in the decisions of someone whether or not they DNA test. When I did my DNA testing and found relatives, this had a chain reaction with cousins finding each other they had lost track of through the years. There can be both good and bad repercussions from testing. It will be increasingly important for DNA testers to consider that in some cases they may find out information with far reaching implications for others in their family and may have to decide what information to share with those possibly affected.
- Twin DNA Who owns a twins gen