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One of the societal concerns listed in the Human Genome page is surreptitious DNA testing. What this means is "testing without the knowledge of the person being tested". This is saying that someone can test a person's DNA, their entire genome,without their knowledge or consent. In a 2012 article in The Lancet, they stated that at time of publication, only about HALF of the states had any kind of legislature in place to protect against this unauthorized testing. Hypothetically, a person can pick up a discarded coffee cup to be tested, an ex can send off hair from a hairbrush, an insurance representative could swipe something with a potential customers DNA on it and have it tested without the person having any knowledge of it being tested and without giving expressed consent. Finding a comprehensive list of any of the state laws in regards to this is proving very difficult. Also noted that those found are more in regards to where the DNA is collected and by whom and not so much in the intent of use of the results. With technological advances, it has become very easy to send off for DNA testing. A quick internet search "DNA testing kits" produces a multitude of hits. One of the more popular and advertised companies is the 23 And Me kit. A person can do an Ancestry kit for $69 or a Health and Ancestry kit for $139 which offers reports on health and wellness, carrier status, traits, and other reports. While digging into their website a bit further and looking at their Terms of Service it states:
"Genetic Information you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, its protection against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established. In addition, GINA does not cover life, long-term care, or disability insurance providers. Some, but not all, states and other jurisdictions have laws that protect individuals with regard to their Genetic Information. You may want to consult a lawyer to understand the extent of legal protection of your Genetic Information before you share it with anybody."
The fact that they are advising contacting a lawyer first- depending on a person's location- speaks volumes to the lack of comprehensive laws and guidance. Also to note, once the information is out there, there is no taking it back or replacing your genome. My take away in this is to tread lightly and with extreme caution.
The Lancet. (2012). Our genomic future. The Lancet, 380(9851), 1360–1360. https://doi.org/10.1016/S0140-6736(12)61783-8
One of the societal concerns listed in the Human Genome page is surreptitious DNA testing. What this means is "testing without the knowledge of the person being tested". This is saying that someone can test a person's DNA, their entire genome,without their knowledge or consent.