The full text of this Note may be found here.
31 Fordham Intell. Prop. Media & Ent. L.J. 926 (2021).
Note by Claire M. Amodio*
few years ago, ancestry websites took the world by storm. People were fascinated with their history and heritage and wanted to find out more about where they came from. Then along came 23andMe, which allowed people to not only unearth their familial roots, but also bring to light unknown medical conditions or predispositions to certain medical issues. 23andMe then took the unprecedented step of teaming up with a pharmaceutical company to create drugs with its users’ genetic information. After this announcement, some users were caught off guard, having had no idea that their genetic information—something so sensitive and uniquely personal to them—was being used to create drugs. While 23andMe presented this possibility in their Research Consent Document, it is clear that many users either did not read it or simply did not understand the terms of their participation. This begs the question: how do users effectively pull their genetic information from research they did not necessarily intend to participate in?
Neither the current American statutory scheme nor property and contract case law provide these users with protection or any way to withdraw from all research they deem unacceptable. Courts have ruled that people who allow their genetic information to be used for research forfeit their property rights to it and that it is not relevant if people did not read the consent form they agreed to, as long as they were put on notice of additional terms. Since these avenues for legal recourse are essentially blocked for users that want to reclaim their genetic information, they should instead pursue a clearer path. Examining gametic material jurisprudence— a similarly situated but more consumer-friendly area of law which involves disputes over the rights to the genetic information found in eggs, sperm, and embryos—may just reveal that new path.
This Note examines the various issues 23andMe’s research program presents for users who wish to fully remove their genetic information from 23andMe’s research given the current American statutory scheme and case law in various American jurisdictions. Under these legal frameworks, the courts do not look to the intent of the parties in deciding who has rights to the genetic material. Rather, courts look to whether there was a forfeiture, consent, and notice of terms. This is in spite of the well-documented fact that people often do not fully read or understand contracts, especially internet contracts, when they agree to them. In contrast, gametic material jurisprudence looks beyond contracts and certain acts to the intent of the donors in deciding who has rights to the gametic material. This legal framework recognizes the reality that people do not necessarily read or understand what they agree to when they allow their genetic material to be used in research and gives those who did not intend to participate in certain kinds of research a way to permanently reclaim their genetic material.
* Claire M. Amodio graduated from Fordham University School of Law in May of 2020. She would like to thank her parents, Cecilia and Mike, for their unending support. She would also like to thank her advisor, Professor Kimani Paul-Emile, for her guidance throughout this process. Last but not least, she would like to thank Elliott Fink, Sara Mazurek, and the entire IPLJ staff for their help, guidance, and patience in getting this Note to the finish line.