The right to know one’s genetic origins and cross-border medically assisted reproduction

Abstract

The use of donor sperm or egg for reproduction raises the issue of the right of donor-conceived individuals to know their genetic origins. This paper argues in favor of acknowledging such a right and explores the challenges that cross-border medically assisted reproduction would raise in relation to it. It first explores possible justifications for such a right by discerning its possible conceptual and empirical groundings. It describes some key ethical and policy implications of the removal of donor anonymity. It then argues that novel technologies such as mitochondrial replacement and gene editing raise new concerns in this area and may expand the scope of such a right. Finally, it argues that while many barriers to accessing information about genetic origins already exist at national levels, cross-border medically assisted reproduction may exacerbate a reality in which many individuals conceived through third-party participation are deprived of information that may be crucial to their future well-being for medical or psycho-social reasons.

Motivations and Attitudes of Men Towards Sperm Donation: Whom to Donate and Why?

“…The issue of donor identifiability has arisen from a social debate about weighing the rights and duties of the resulting child against the rights of the donor. On the one hand, it is argued that the child has the right to know his or her genetic origins, ancestry, and history (Ravitsky, 2017 ), while on the other hand, it is argued that the donor has the right to privacy and distance from the child (Pennings, 2019a , b ). Of course, these conflicting rights have led to heated debate (Pennings, 2019a , 2019b ; MacPherson, 2019 ).…”

Mitochondrial Donations and the Right to Know and Trace One’s Genetic Origins: an Ethical and Legal Challenge

“…The right to know and trace one's own genetic origin 27 is defined as the right of donor-conceived persons to access information concerning the donors of their genetic material (e.g., sperm, eggs, embryos). 28 Despite its apparent straightforwardness, this right is broad enough to generate interpretative challenges at least on three aspects, namely (i) the medical aspect (i.e., the right to access one's full family medical history as well as other medically relevant genetic information about the donors); (ii) the identity aspect (i.e., the right to access personal information about the identity of the donors, which could assist the offspring in forming and completing the picture of his/her own identity) 29 ; and (iii) the relational aspect (i.e., the right to know the full identity of the donors, including their exact location, with the purpose of attempting to establish a relationship with them) 30 .…”

“…).Netherlands38 , New South Wales39 , New Zealand40 , Norway 41 , Sweden42 , Victoria43 and Western Australia44 ) the right to know and trace one's genetic origins has been recognized as a legal right, in a few other countries their laws still protect the anonymity of donors (e.g., Spain, France, Denmark) 45. Those who argue against the right to know and trace one's genetic origins and in favor of anonymity laws claim that this right does not necessarily guarantee more protection of the best interests of the donor-conceived person, compared to the protection presumably provided by anonymity laws.…”

Genetic databases and donor anonymity

“…The harms experienced by individuals who were denied access to their genetic origins, and hence half of their ancestry and medical history, also need to be taken into account. It is now widely recognised that the rights of the child trump the rights of the adult (Hallich 2017) and that individuals have a natural right to not to be deceived as well as a prima facie right to know their genetic heritage (Ravitsky 2017). The possibility of discovering an unexpected biological heritage is a consequence of not having been given accurate information about their biological parentage, in other words having been deceived about a central feature of their identity.…”