Genetic information is basically one’s DNA sequence, which includes health information and genetic information about the individual and their family. It is at the core of one’s individual privacy, as well as providing information on family members. As technology advances, genetic testing is easier and cheaper to obtain, and there are numerous companies in the market that offer quick and cost-effective genetic testing. The ethics of genetic testing is outside the scope of this piece, but is interesting in its own right.
Vanderbilt University School of Medicine has announced that it received a four-year, $4 million grant from the National Institutes of Health to establish the Vanderbilt Center for Genetic Privacy and Identity in Community Settings, which will study privacy concerns associated with the use of genomic information.
According to Vanderbilt, the Center will “examine the likelihood that lapses in protecting genomic information allow people to be identified, how people perceive such risks, and how effective legal and policy efforts are in reducing them.” The Center’s goal is to develop policy recommendations about this complex area.
Why should we be concerned about the use of our genomic information? According to the Council for Responsible Genetics (www.councilforresponsiblegenetics.org), one reason why the use of genetic information is important is because of genetic discrimination. It documented over five hundred cases where the use of genetic information was used to deny individuals employment or health or life insurance. The Genetic Information Non-discrimination Act (GINA) was passed in 2008 to provide individuals protection from these types of discriminatory behaviors.
Genomic information is used by law enforcement to investigate crimes and DNA is now being used to exonerate those who have been wrongfully accused and imprisoned. Often, when one is accused of a crime, s/he is required to submit to a DNA test and has no choice, which was upheld by the U.S. Supreme Court in a 5-4 decision. The FBI’s National DNA Index System (NDIS) is a database that is populated with DNA samples of crime scenes, those arrested for crimes and those convicted of crimes. It holds millions of samples. And it doesn’t delete the samples of those arrested, but not convicted or of victims. Privacy advocates contend that the DNA samples can be used for other purposes—there are no rules around how the samples can be used by law enforcement once they have it, and that samples collected in a law enforcement setting should have privacy protections over how it is collected, maintained, stored, used and expunged.
Most concerning are the issues around surreptitious collection of DNA or genomic information. There is no federal law that prohibits surreptitious DNA testing. Some states have enacted legislation prohibiting the use and disclosure of genetic information, but not all. Further, when consumers send off a swab of the inside of their mouth to a private company to perform genetic testing, the company is not prohibited by law from using, selling or further disclosing the information as it is not covered by HIPAA and prohibited from doing so like your doctor or hospital is.
In fact, usually the individual has given consent to allow the company to use and disclose the information any way it sees fit somewhere in the fine print.
According to the Presidential Commission for the Study of Bioethical Issues’ publication “Privacy and Progress in Whole Genomic Sequencing,” one of the greatest concerns of the collection of genomic data is “Because whole genome sequence data provide important insights into the medical and related life prospects of individuals as well as their relatives–who most likely did not consent to the sequencing procedure–these privacy concerns extend beyond those of the individual participating in whole genome sequencing…data gathered now may well reveal important information, entirely unanticipated and unplanned for…”
Another privacy concern listed includes the potential for unauthorized access to and misuse of information. The example given is someone picking up a discarded coffee cup, sending the cup and saliva from the cup to a commercial lab to try to find out the person’s predisposition of a neurodegenerative disease and use it in a custody dispute, or expose it on social media to embarrass the individual or “adversely affect that individual’s chance of finding a spouse, achieving standing in the community, or pursuing a desired career path” or worse-like blackmail.
You might not have control over some collection of your DNA, but you do have control of giving your genomic information to commercial entities. Before you do, consider the impact of sharing your DNA with commercial entities and find out what you are consenting to before you send it. Your genomic information includes information about your family members too, so your decision may affect others. Be educated on how your genomic information will be used, sold or disclosed before you send it off and consent to its unlimited use. It may affect you or your children in the future.