GENETIC-BASED ANCESTRY SEARCHES MAY RELINQUISH PRIVACY RIGHTS – FOR YOU AND YOUR FAMILY MEMBERS
Many of our friends and clients have had great enjoyment in learning about their family trees with genetic-based searches. But as is often the case — the details are in the fine print.
Your genetic information remains on file. In certain instances, your DNA information can be released to insurers, marketers, law enforcement, and other agencies that most people have never considered.
Further, that DNA will have characteristics that could be used to diminish the privacy of relatives.
The use of DNA information in criminal investigations is now routine. But individuals who share their genetic code are essentially sharing information about family members who may not have consented to reveal such data. This process, known as “familial DNA searching” uses special software to generate lists of potential relatives.
Familial searches are useful to law enforcement and help identify people who likely would not have been suspect otherwise.
In June, 2017, the New York Commission on Forensic Science, a panel of State Medical Examiners, voted 9 to 2 approving a familial search policy. The policy allows officials to search state data bases with 600,000 profiles in New York State. Litigation soon followed through the Legal Aid Society and a large New York firm, Gibson, Dunn & Crutch, LLP.
Most bioethisists analyzing the situation conclude that people do not understand the breadth of the searches and the risks involved.
Consider the alleged “Golden State Killer”. This long-standing “cold case” was solved through the use of the familial DNA search. Joseph James DeAngelo has been charged in the case and was arraigned in Sacramento, California on April 27, 2018. Familial DNA matched DeAngelo’s own DNA (which he discarded).
Here is the question: do we want insurers, employers, marketers, law enforcement, and other agencies having unfettered access to the DNA of entire lineages of customers for these ancestry-based services?
These are unchartered and unregulated waters. But it warrants serious consideration before you upload genetic information to an online database.