Couples' willingness to donate embryos for research: a longitudinal study

Abstract

Quality of care guided by patients' characteristics, values, preferences, and needs calls for considering the factors and reasons underlying couples' willingness to donate embryos for research over time as a topic in psychosocial guidelines for infertility and medically assisted reproductive care.

A patient-centred approach to embryo donation for research

“…Evidence showing changes in couples’ willingness to donate embryos for research supports the idea of a two/three-stage process to obtain full informed consent [9, 10, 20]. It also reinforces the argument that it should be signed only after the infertility treatment is completed, as recommended by the Ethics Committee of the American Society for Reproductive Medicine [19].…”

“…However, existing studies adopting a patient-centred approach do not explore the specific process of decision-making about embryo disposition, and in particular regarding embryo donation for research. Knowledge of patients’ perspectives and experiences with regard to embryo donation for research is essential for the conceptualization of patient-centred policies and for ethics in clinical practice at the following levels:To analyse openness and information about research with human embryos;To sustain stakeholders’ decisions regarding the suitability of research projects using cryopreserved embryos; andTo disseminate ethically robust evidence to inform policies and guidelines on embryo cryopreservation and embryo disposition, namely concerning the informed consent implementation on a two/three-stage process [9, 10, 20], and the establishment of storage periods and the reasons for limitations in these periods [32], in a context where the views of the patients apply across legal and political boundaries. …”

“…To disseminate ethically robust evidence to inform policies and guidelines on embryo cryopreservation and embryo disposition, namely concerning the informed consent implementation on a two/three-stage process [9, 10, 20], and the establishment of storage periods and the reasons for limitations in these periods [32], in a context where the views of the patients apply across legal and political boundaries.…”

“…Evidence has consistently shown that this is a complex and difficult decision-making process, involving several stages and patient preferences that can change over time [7–10]. The paper from Aviad Raz and colleagues, which was recently published in the IJHPR, provides an extended approach to the understanding of the attitudes, values and perceptions of IVF patients who decided to donate cryopreserved embryos to research, based on in-depth interviews with patients from an IVF unit in Israel [11].…”

“…The responsibility of scientific and medical institutions, health professionals and researchers regarding the provision of accurate and timely information that is attentive, responsive, and tailored to patients’ needs should be highlighted, in a context where a decrease in patients’ willingness to donate embryos for research over time is being observed [10, 20]. Investment in information provision is especially important, taking into account that the majority of patients highlighted feelings of trust and reciprocity towards the health professionals who contacted with them, as well as confidence in the medical and scientific institutions.…”