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Claim of Advocacy
Claim of Advocacy
Congress should expand the Genetic Information Nondiscrimination Act (GINA) to specifically require informed consent for organizations to share or sell individual citizens’ genetic information.
INTRODUCTION
Expanding GINA to allow the need for informed consent presented by organizational groups to individual citizens within the United States provides a sense of additional comfort and an ethical path with regard to dealing with the gravity of one's own genetic information. Currently, the use of DNA analysis within the growing economy of America continues to expand; this procedure is seen to aid in the resolution of unsolved crimes, the determination of ancestry/paternity, and finding cures for debilitating illnesses and diseases. The importance of the use of this costly medicine is apparent, but the way in which it is obtained must be met with expectations and regulations. Informed consent, in this scenario, demonstrates the way in which an organization will go about telling an individual of the need for their genetic information, while also being sure to state where this information will be going (other third parties), as well as what exactly will be done with this information.
LAW ENFORCEMENT
In recent years, we have learned so much more in the way of genetic information. This means that there is now a higher demand to obtain genetic information. For example, millions of people now seek ways of obtaining their own DNA to learn more about their ancestry, biomedical researchers want to examine genetic information to understand the ways that genetic variation contributes to health and disease, and law enforcement requests to use this information to identify victims of mass attacks or convict criminal suspects. In one Spotify podcast called Cold Cases, the narrator covers a serial killer from the early 1970s by the name of John Wayne Gacy. Gacy murdered 33 young boys and men and stashed the bodies in the crawl space beneath his house. Once discovered decades later, the only way to identify the victims was through dental and x-ray records since no flesh remained for fingerprint analysis. Investigators on the case asked for dental records in several different waves to help identify John Doe’s and bring closure to the families. In the end, 22 of the 33 families were able to gain closure by voluntarily sending in dental records of family members who have gone missing over the years. The important part, was that law enforcement gave the option to the citizens and didn't access medical records without letting them know.
EMPLOYMENT DISCRIMINATION
While the Genetic Information Non-Discrimination act does protect against insurance and employment discrimination, there are many settings in which GINA does not protect citizens, including housing, mortgage lending, education, and public accommodations. According to a YouTube video from the Center for Ethics in Science and Technology, while health information in medical settings is protected by the Health Insurance Portability and Accountability Act (HIPAA), genetic testing done outside of medical settings is not protected by HIPPA, nor is it protected by GINA. In one such case, two employees were pressured by their company to submit DNA samples in order to find a match for fecal matter in a warehouse that managed produce. Pressuring employees to submit DNA samples is not explicitly prohibited by GINA; these employees sued the company after their information was released. In other words, this company, (insert company name), did not offer transparency to their employees about their rights to privacy in their genetic information.
Expanding the Genetic Information and Non-Discrimination Act to require informed consent will help employees like these to understand their rights to privacy. Additionally, expanding the act to sectors like housing, education, and public accommodations will create a more informed public, and will decrease the likelihood of discrimination based on genetic information.
PATERNAL PRIVACY
As previously mentioned, the growing popularity of direct-to-consumer (DTC) genetic testing has raised many issues about the need for genetic privacy. The most common use of DTC genetic testing is for people to find out more about their ancestry. While wanting to know more about where you come from might seem like a harmless personal decision, the lack of privacy provided by these DTC genetic testing companies can open the door to serious negative consequences. A mother who conceived her child with sperm from an anonymous donor used the 23andMe genetic test to learn more about her child’s ancestry. The test reported an immediate relative of the child and provided the means to contact the relative. After receiving a “cease and desist” from the sperm bank, the mother realized the “relative” was the sperm donor. Since the mother had signed a contract stating she would not try to contact the donor, the bank barred her from using the same donor’s samples in the future. 23andMe’s inability to maintain the privacy of its user’s genetic information and provide users with full disclosure of the consequences of the testing took away a mother’s ability to give her daughter genetic siblings. Even if 23andMe does warn users of situations like this, it would likely be buried deep in the legalese of their “Terms of Agreement”, making it a far stretch from being considered full disclosure or informed consent. Unfortunately, 23andMe was operating entirely within the current laws governing genetic privacy. This leaves U.S. legislators to blame for not doing enough to codify their constituents’ rights to genetic privacy, calling for a natural expansion of GINA.
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