Making the Case for a Privacy Law Approach to Human Biomaterial Regulation
Creators: Toews, Maeghan E
Publisher: name: University of Alberta Library
Year: 2024

<p>Human biomaterials are in high demand from a wide variety of stakeholders, giving rise to tension and debate about the amount of control individuals should have over materials derived from their own bodies. As biobanks, universities, governments, and corporations increasingly assert control over biomaterials, individuals are left with a paltry set of legal options to protect their interests or obtain remedies when their interests are infringed. This thesis therefore identifies the limitations of existing regulatory options and proposes privacy law as a new legal tool to better recognize and protect individual interests in biomaterials. This is accomplished through a doctrinal examination of relevant law and literature applicable to biomaterial regulation and privacy law across common law jurisdictions. </p>

<p>This work considers a range of statutory instruments and governance frameworks that regulate certain biomaterial uses (such as transplantation, research, and assisted reproduction) and shows that these instruments lack enforceable rights and remedial mechanisms. This work then considers the prospect of property law to fill this remedial vacuum, an issue that has dominated the literature in biomaterial regulation. An examination of relevant case law demonstrates that, where there are genuine contests of control over biomaterials between individuals and institutions, property rights will likely be allocated to institutions. This is, in part, because property law is better suited to recognize and protect the economic and market-based interests at stake for institutions rather than the dignity and autonomy-based interests of individuals.</p>

<p>Privacy law, on the other hand, is designed to protect autonomy and dignity-based interests. This work therefore considers whether information privacy statutes and privacy torts could be useful to recognize and remedy violations of these interests. With respect to information privacy statutes, this thesis considers whether there is scope for physical biomaterials to be treated as a form of “personal information”, thus attracting new legal rules for their collection, storage, use, and transfer. This idea originates from discourse identifying an “informatization” of the human body currently underway. As the genetic information within biomaterials continues to grow in value and becomes increasingly accessible, there is less reason to maintain regulatory distinctions between “physical” biomaterials and the “information” within them. </p>

<p>With respect to privacy torts, this thesis argues that there are both informational and personal privacy interests in biomaterials that, when violated, could be remedied through these privacy-based causes of action. This thesis considers situations of surreptitious genetic testing, biomaterials used in research without consent, and interferences with the deceased bodies of a plaintiff’s loved one, to illustrate the potential operation of privacy torts to biomaterial cases where a plaintiff might otherwise be left without a remedy. This analysis shows that privacy torts may offer protection in some circumstances, however, there is great jurisdictional variability in the privacy tort landscape, and individual success may therefore depend on the factual underpinnings and location of the relevant claim. </p>

<p>Overall, the field of privacy law is growing in scope, and both legislatures and judiciaries have demonstrated a willingness to respond to social harms from advancing technologies by expanding the boundaries of this legal field. While current privacy frameworks may need to evolve further to meaningfully address and overcome the limitations of other relevant frameworks, this thesis argues that it is possible and potentially beneficial for the law to evolve in this direction to provide individuals greater control over their biomaterials. This possibility calls for greater scholarly attention to the potential role of privacy law in this context. At a minimum, a privacy law comparison provides insights into how legal claims, rights, and remedies need to be structured to provide individuals with the protection they currently lack as the quest to solve the complex problem of human biomaterial regulation continues.  </p>