Strengths and pitfalls of Canadian gamete and embryo donor registries: searching for beneficent solutions.
For the gamete and embryo donation community, it is well recognized that the implementation of a gamete and embryo donor registry (GEDR) represents a good initiative to ensure the best possible health conditions for donor-conceived individuals. Be they national, institutional or independent, GEDR can play a major role in the transmission of health-related genetic and medical information. However, from a bioethical analysis standpoint, GEDR raise many questions regarding the extent of their beneficent nature. Based on the recent Canadian GEDR aborted attempt, this article will focus on bioethical issues and paradoxes that can impact the wellbeing of donor-conceived individuals, half-siblings, donors and parents. On one hand, the implementation of a GEDR can be ethically justified as a beneficent action towards lessening harm associated with the transmission of hereditary disease and increasing the effectiveness of preventive and therapeutic approaches. On the other hand, examined through the concept of nonpaternalistic beneficence, GEDR challenge us to recognize beneficiaries' free agency, as well as the importance to transmit reliable and pertinent information. Ultimately, beyond an individualistic application of the principle of beneficence, socioethics invite us to consider consistency with societal values as a prerequisite for achieving a common good. Because the issue of whether or not to protect the donor's anonymity occupies the forefront of the discussion surrounding gamete and embryo donation, there is less interest in other initiatives, which may be implemented to ensure the best possible medical and psychosocial conditions for donor-conceived individuals. In this article, we propose a bioethical analysis of the use of gamete and embryo donor registries (GEDR) from the angle of the principle of beneficence. More specifically, we will concentrate on the Canadian situation regarding GEDR. We will look at the strengths and pitfalls of this mechanism and suggest a solution to maximize the benefits of a GEDR. Many have suggested that such an initiative could have a beneficial impact on the wellbeing of donor-conceived individuals, half-siblings, donors and parents, by ensuring the constant flow of health-related medical and genetic information. As self-evident as the social acceptability of a GEDR may seem, we wish to show the limitations of the benefits that a registry is supposed to provide. We argue that a GEDR has to do more than simply transmit health-related information between parties. It also has to be based on pertinent and reliable data, be useful for health promotion and recognize beneficiaries' free agency. Ultimately, the implementation of a GEDR has to take into consideration wider social values.
Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12[th] Avenue North, Sherbrooke, Qc, Canada J1H 5N4.
Vincent
V
Couture
Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12[th] Avenue North, Sherbrooke, Qc, Canada J1H 5N4.
Marie-Andrée
MA
Dubois
Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12[th] Avenue North, Sherbrooke, Qc, Canada J1H 5N4.
Régen
R
Drouin
Department of Obstetrics-Gynecology, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12[th] Avenue North, Sherbrooke, Qc, Canada J1H 5N4; National Institute of Excellence in Health and Social Services, 2021, Avenue Union, Room 10.082, Montréal, Qc, Canada H3A 2S9.
Jean-Marie
JM
Moutquin
Division of Genetics, Department of Pediatrics, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12[th] Avenue North, Sherbrooke, Qc, Canada J1H 5N4. Electronic address: Chantal.Bouffard@icloud.com.
Chantal
C
Bouffard
D002170:Canada; D019924:Embryo Disposition; D018587:Oocyte Donation; D012042:Registries / Q000941:ethics*; D009927:Tissue and Organ Procurement
bioethics; donor-conceived individual; embryo donation; gamete donation; health-related law; registry