Catarina Samorinha1, Margarida Pereira2, Helena Machado3, Bárbara Figueiredo4, Susana Silva2. 1. Institute of Public Health - University of Porto (ISPUP), Rua das Taipas, n° 135, 4050-600 Porto, Portugal Department of Clinical Epidemiology, Predictive Medicine and Public Health, University of Porto Medical School, Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal catarina.samorinha@ispup.up.pt. 2. Institute of Public Health - University of Porto (ISPUP), Rua das Taipas, n° 135, 4050-600 Porto, Portugal Department of Clinical Epidemiology, Predictive Medicine and Public Health, University of Porto Medical School, Alameda Prof. Hernâni Monteiro, 4200-319 Porto, Portugal. 3. Department of Sociology, University of Minho, Campus de Gualtar, 4710-057 Braga, Portugal. 4. School of Psychology, University of Minho, Campus de Gualtar, 4710-057 Braga, Portugal.
Abstract
BACKGROUND: Systematic knowledge on the factors that influence the decisions of IVF users regarding embryo donation for research is a core need for patient-centred policies and ethics in clinical practice. However, no systematic review has been provided on the motivations of patients who must decide embryo disposition. This paper fills this gap, presenting a systematic review of quantitative and qualitative studies, which synthesizes the current body of knowledge on the factors and reasons associated with IVF patients' decisions to donate or not to donate embryos for research. METHODS: A systematic search of studies indexed in PubMed, ISI WoK and PsycINFO, published before November 2013, was conducted. Only empirical, peer-reviewed, full-length, original studies reporting data on factors and reasons associated with the decision concerning donation or non-donation of embryos for research were included. Eligibility and data extraction were performed by two independent researchers and disagreements were resolved by discussion or a third reviewer, if required. The main quantitative findings were extracted and synthesized and qualitative data were assessed by thematic content analysis. RESULTS: A total of 39 studies met the inclusion criteria and were included in the review. More than half of the studies (n = 21) used a quantitative methodology, and the remaining were qualitative (n = 15) or mixed-methods (n = 3) studies. The studies were derived mainly from European countries (n = 18) and the USA (n = 11). The proportion of IVF users who donated embryos for research varied from 7% in a study in France to 73% in a Swiss study. Those who donate embryos for research reported feelings of reciprocity towards science and medicine, positive views of research and high levels of trust in the medical system. They described their decision as better than the destruction of embryos and as an opportunity to help others or to improve health and IVF treatments. The perception of risks, the lack of information concerning research projects and the medical system and the conceptualization of embryos in terms of personhood were the most relevant motives for not donating embryos for research. Results relating to the influence of sociodemographic characteristics and reproductive and gynaecological history were mostly inconclusive. CONCLUSIONS: Three iterative and dynamic dimensions of the IVF patients' decision to donate or not to donate embryos for research emerged from this review: the hierarquization of the possible options regarding embryo disposition, according to the moral, social and instrumental status attributed to embryos; patients' understanding of expectations and risks of the research on human embryos; and patients' experiences of information exchange and levels of trust in the medical-scientific institutions.
BACKGROUND: Systematic knowledge on the factors that influence the decisions of IVF users regarding embryo donation for research is a core need for patient-centred policies and ethics in clinical practice. However, no systematic review has been provided on the motivations of patients who must decide embryo disposition. This paper fills this gap, presenting a systematic review of quantitative and qualitative studies, which synthesizes the current body of knowledge on the factors and reasons associated with IVFpatients' decisions to donate or not to donate embryos for research. METHODS: A systematic search of studies indexed in PubMed, ISI WoK and PsycINFO, published before November 2013, was conducted. Only empirical, peer-reviewed, full-length, original studies reporting data on factors and reasons associated with the decision concerning donation or non-donation of embryos for research were included. Eligibility and data extraction were performed by two independent researchers and disagreements were resolved by discussion or a third reviewer, if required. The main quantitative findings were extracted and synthesized and qualitative data were assessed by thematic content analysis. RESULTS: A total of 39 studies met the inclusion criteria and were included in the review. More than half of the studies (n = 21) used a quantitative methodology, and the remaining were qualitative (n = 15) or mixed-methods (n = 3) studies. The studies were derived mainly from European countries (n = 18) and the USA (n = 11). The proportion of IVF users who donated embryos for research varied from 7% in a study in France to 73% in a Swiss study. Those who donate embryos for research reported feelings of reciprocity towards science and medicine, positive views of research and high levels of trust in the medical system. They described their decision as better than the destruction of embryos and as an opportunity to help others or to improve health and IVF treatments. The perception of risks, the lack of information concerning research projects and the medical system and the conceptualization of embryos in terms of personhood were the most relevant motives for not donating embryos for research. Results relating to the influence of sociodemographic characteristics and reproductive and gynaecological history were mostly inconclusive. CONCLUSIONS: Three iterative and dynamic dimensions of the IVFpatients' decision to donate or not to donate embryos for research emerged from this review: the hierarquization of the possible options regarding embryo disposition, according to the moral, social and instrumental status attributed to embryos; patients' understanding of expectations and risks of the research on human embryos; and patients' experiences of information exchange and levels of trust in the medical-scientific institutions.
Authors: Jennifer Drevin; Dag Nyholm; Håkan Widner; Trinette Van Vliet; Jennifer Viberg Johansson; Elena Jiltsova; Mats Hansson Journal: BMC Med Ethics Date: 2022-10-19 Impact factor: 2.834
Authors: Aviad Raz; Jonia Amer-Alshiek; Mor Goren-Margalit; Gal Jacobi; Alyssa Hochberg; Ami Amit; Foad Azem; Hadar Amir Journal: Isr J Health Policy Res Date: 2016-11-05