Shelly Simana. 2023. “
Genetic Property Governance.” Yale Journal of Law and Technology, 25, Pp. 144-218.
Publisher's VersionAbstract
The law governing an “individual genome” (the genetic material and information extracted from a single person) in the United States has two key shortcomings. First, it adopts a binary view of ownership, permitting only one entity to claim ownership over an individual genome—either the person from whom it was extracted or someone else, such as researchers and law enforcement officials. Consequently, the law fails to represent and protect the legitimate concurrent ownership interests of multiple entities stemming from, e.g., self-ownership and personhood, labor, and possession. Instead, it prioritizes one interest at the expense of another. Second, the law fails to accommodate the multifaceted and relational nature of an individual genome. An individual genome consists of both genetic material and genetic information; involves personal, familial, and collective aspects; and has varying degrees of excludability and subtractability. The law, however, does not consider these characteristics together.
This Article offers a new legal framework, “Genetic Property Governance,” which is a form of collective ownership over an individual genome that balances the generation of social benefits and wealth with the need to prevent severe individual and social harms. The proposed framework embraces the idea of an individual genome as a commons, incorporating liberal and pluralistic accounts of property and balancing conflicting interests via two principles, proportionality and reasonableness. Overall, under Genetic Property Governance, an individual genome is a shared enterprise that reflects multiple interests and characteristics to yield just and productive outcomes.
Shelly Simana. 2023. “
Malleable Morality: Re-Shaping Moral Judgments in Health Policymaking.” Journal of Law, Medicine, and Ethics, 51, Pp. 344 - 354.
Publisher's VersionAbstractGovernments often seek the advice of “moral experts,” such as bioethicists and moral philosophers. They commonly assume that these experts’ moral judgments are primarily a product of deliberate reasoning. The article challenges this assumption, arguing that experts’ moral judgments may instead be primarily a product of moral intuitions which, often subconsciously, respond to the social setting. Therefore, health policymaking should involve a broader public dialogue.
Shelly Simana and Vardit Ravitsky. 2023. “
Rewriting the Genetic Bond: Gene Editing and Our Understanding of Genetic Parenthood.” Bioethics, 37, Pp. 265-274.
Publisher's VersionAbstract
One of the most prominent justifications for the use of germline gene editing (GGE) is that it would allow parents to have a “genetically related child” while preventing the transmission of genetic disorders. However, we argue that since future uses of GGE may involve large‐scale genetic modifications, they may affect the genetic relatedness between parents and offspring in a meaningful way: Due to certain genetic modifications, children may inherit much less than 50% of their DNA from each parent. We show that the reduction in genetic relatedness between parents and offspring has three important social and legal implications. First, the desire for a genetically related child may end up not being the strong justification it is currently thought to be for the use of GGE. Second, prospective parents may be reluctant to use GGE because of a potential loss of genetic relatedness. Third, in some jurisdictions, parents who would not pass on “enough” DNA to their child may not be recognized as the child's legal parents. We further argue that the reduction in genetic relatedness challenges current conceptions of genetic parenthood that rely on the quantity of DNA shared with the child or on whether the child was directly derived from the parent's genes. We suggest that genetic parenthood should instead be determined based on the nature of the genetic modifications and whether the child's numerical identity has been preserved after the editing process.