Abstract
In an age where consumers can easily obtain genetic tests by simply sending a saliva or cheek swab sample through the mail and learn more than ever about their DNA and its genetic makeup, it is imperative that measures are established to provide consumers with both control and protection to the privacy of their submitted biological sample and analyzed genetic data. Currently, the landscape of genetic testing, and the resulting genetic information, is regulated by one law in New Mexico. The Genetic Information Privacy Act (NM-GIPA or Act), enacted in 1998, provides general prohibitions on the collection of genetic information or samples for genetic analysis without an individual’s informed consent. Because the Act’s effectiveness is limited by its narrow definitions, inadequate consent requirements, and blanket exceptions, it leaves consumers susceptible to improper uses of their genetic data without their knowledge or consent. This is especially the case where genetic testing and analysis is obtained through private, direct-to-consumer genetic testing (DTC-GT) companies, which have significantly gained popularity over the last decade. New Mexico has an opportunity to address the vulnerabilities posed by DTC-GT by amending NM-GIPA to protect consumers who use DTC-GT services to submit their biological samples for genetic testing and analysis or to upload their genetic data for interpretation. Strengthening the regulation of genetic testing and data provides consumers with personal autonomy over how their genetic data is used, helping to prevent improper usage, discrimination, or unauthorized exposure of the genetic data. Regardless of a consumer’s motivations to explore their DNA, it should not come at the cost of compromising the consumer’s personal autonomy or privacy of their genetic information.
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
Recommended Citation
Ibrahim Al-Gahmi,
Don't Swab Me!: Limitations of the Genetic Information Privacy Act in the Modern Genetic Testing Landscape,
54
N.M. L. Rev.
265
(2024).
Available at:
https://digitalrepository.unm.edu/nmlr/vol54/iss1/9
