title: Couples' willingness to donate embryos for research: a longitudinal study.
abstract: BACKGROUND
  Decision-making on embryo disposition is a source of distress and is subject to change over time. This paper analyzes the willingness of couples undergoing in vitro fertilization to donate cryopreserved embryos for research from 15 days after embryo transfer to 12 months later, taking into account the influence of psychosocial, demographic, and reproductive factors.
  
  
  METHODS
  Prospective longitudinal study, with 74 heterosexual couples undergoing in vitro fertilization in a public fertility centre in Portugal, recruited between 2011 and 2012. Participants were evaluated twice: 15 days after embryo transfer and 12 months later.
  
  
  RESULTS
  A significant decrease in patients' willingness to donate embryos for research over time was observed [86.5% to 73.6%; relative risk (RR) = 0.85; 95% CI 0.76-0.95]. A higher education level (>12 years) [adjusted RR (RRadj ) = 0.79; 95% CI 0.64-0.96], considering research on human embryos to be important (vs. very important) (RRadj = 0.59; 95% CI 0.39-0.85) and practicing a religion less than once a month (vs. at least once a month) (RRadj = 0.73; 95% CI 0.53-1.00) seemed associated with unwillingness to donate embryos for research over time. Change towards non-donation happened mainly among couples who first considered that it was better to donate than wasting the embryos. Change towards donation occurred mostly among those stating that their priority at time 1 was to have a baby and who became pregnant in the meantime.
  
  
  CONCLUSIONS
  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.
authors.affiliation: EPIUnit (UID/DTP/04750/2013), Institute of Public Health, University of Porto, Porto, Portugal.|Department of Clinical Epidemiology, Predictive Medicine and Public Health, University of Porto Medical School, Porto, Portugal.
authors.forename: Catarina
authors.identifier: http://orcid.org/0000-0002-6662-0347
authors.initials: C
authors.lastname: Samorinha
authors.affiliation: EPIUnit (UID/DTP/04750/2013), Institute of Public Health, University of Porto, Porto, Portugal.|Department of Clinical Epidemiology, Predictive Medicine and Public Health, University of Porto Medical School, Porto, Portugal.
authors.forename: Milton
authors.identifier: http://orcid.org/0000-0002-5787-4871
authors.initials: M
authors.lastname: Severo
authors.affiliation: Centre for Social Studies, University of Coimbra, Coimbra, Portugal.
authors.forename: Helena
authors.identifier: http://orcid.org/0000-0001-8554-7619
authors.initials: H
authors.lastname: Machado
authors.affiliation: School of Psychology, University of Minho, Braga, Portugal.
authors.forename: Bárbara
authors.identifier: http://orcid.org/0000-0002-8209-7445
authors.initials: B
authors.lastname: Figueiredo
authors.affiliation: EPIUnit (UID/DTP/04750/2013), Institute of Public Health, University of Porto, Porto, Portugal.|Centre for Research and Studies in Sociology, University Institute of Lisbon, Lisbon, Portugal.
authors.forename: Cláudia
authors.identifier: http://orcid.org/0000-0002-1828-8642
authors.initials: C
authors.lastname: de Freitas
authors.affiliation: EPIUnit (UID/DTP/04750/2013), Institute of Public Health, University of Porto, Porto, Portugal.
authors.forename: Susana
authors.identifier: http://orcid.org/0000-0002-1335-8648
authors.initials: S
authors.lastname: Silva
mesh_terms: D000328:Adult; D001294:Attitude to Health; D015925:Cryopreservation; D003657:Decision Making; D004522:Educational Status; D019924:Embryo Disposition / Q000523:psychology*; D033041:Embryo Research; D004624:Embryo Transfer; D005191:Family Characteristics; D005260:Female; D005307:Fertilization in Vitro; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D011174:Portugal; D011446:Prospective Studies; D012067:Religion; D012945:Social Values; D014019:Tissue Donors / Q000523:psychology*
keywords: Cryopreserved embryos; decision making; embryo disposition; in vitro fertilization; longitudinal study; patient-centred care