Various entities, such as genetic testing and biotech companies, biobanks, research institutions, and government agencies, collect, analyze, and share human genetic material and information. When maximizing the benefits they obtain from these resources, such entities frequently employ exploitative practices that take advantage of power and information asymmetries. For example, they require individuals to waive property rights over genetic material and information, use these resources for purposes other than those for which they were obtained without the individuals’ knowledge or comprehension of the implications, or collect these resources surreptitiously. Exploitative practices steer genetic material and information toward the ends of powerful entities while undermining individuals’ property and privacy interests. They result in “appropriative harms.”

The existing legal framework in the United States is fragmented, excessively narrow, and riddled with inconsistencies. Consequently, it falls short of effectively addressing exploitative practices and mitigating the profound power and information asymmetries in the genetic sphere. This Article addresses this gap by laying the theoretical and regulatory groundwork for future legal reform. It creates a new statutory category of “Gene Stewards,” proposing to impose quasi-fiduciary duties of loyalty and care on every powerful entity in the genetic sphere, whether public or private. These duties highlight the value of trust and mandate that powerful entities act ethically and responsibly as stewards of identifiable and de-identified genetic material and information.

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.

Governments 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.

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.

Scientific advances enable to retrieve and use gametes of a deceased person, thereby creating a child after the death of a genetic parent. This article reviews and compares legislation governing posthumous reproduction in the United States, the United Kingdom, Australia, and Israel. It shows that each country has its own distinctive features, yet three common elements exist—legal ambiguity, a requirement for prior consent, and permission for the partner, but not the parents, to retrieve and use the deceased's gametes. The article demonstrates that courts often do not follow the legal requirements, and thus there are no clear guiding principles regarding posthumous reproduction. The article then discusses three justifications for permitting posthumous reproduction in the absence of the deceased's prior consent. The first justification relates to an interest in ‘genetic continuity’, which reflects people's desire in leaving a ‘piece’ of themselves in the world and maintaining a chain of continuity. The second justification concerns the ‘respect-for-wishes’ model of autonomy, according to which people must be treated in a way that we assume they would want to be treated. The third justification touches upon the interests of the deceased's partner and parents, as well as of the resulting child.

 

The paper was cited by the New York Supreme Court in Matter of Zhu, 2019 NY Slip Op 29146;

The paper was selected as Editors’ Choice 2020 of the Journal of Law and the Biosciences.

A new regulatory framework aimed at reducing the risks associated with SCT travel and the provision of unproven SCT should be implemented. It should include professional guidelines, an accreditation system that would evaluate SCT being offered by clinics, enforcement mechanisms against fraud, reimbursement by insurers for approved SCT, and residency requirements.