title: What does 'respect for persons' require? Attitudes and reported practices of genetics researchers in informing research participants about research.
abstract: BACKGROUND
  It has been suggested that researchers are obliged to offer summary findings to research participants to demonstrate respect for persons, and that this may increase public trust in, and awareness of, the research enterprise. Yet little research explores researchers' attitudes and practices regarding the range of initiatives that might serve these ends.
  
  
  METHODS
  Results of an international survey of 785 eligible authors of genetics research studies in autism or cystic fibrosis are reported.
  
  
  RESULTS
  Of 343 researchers who completed the survey (44% response rate), the majority agreed that their team should (i) inform participants of summary findings (90.7%) and (ii) ensure they gain an awareness of developments in the field (86.9%). Additionally, the majority reported that in practice, their team (i) informs participants of summary findings (69.4%) and (ii) provides other types of relevant non-results information (eg, state of science in the field, opportunities for research participation) (67.9%).
  
  
  CONCLUSIONS
  Researchers endorsed the obligation of communicating with research participants by providing summary findings and other research-related information in equal measure. In light of these findings, it is suggested that while the provision of summary results may contribute to efforts to discharge the obligation of respect for persons, it may be neither a necessary nor a sufficient means to this end.
authors.affiliation: Department of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, Toronto, Ontario, Canada. fiona.miller@utoronto.ca
authors.forename: Fiona Alice
authors.initials: FA
authors.lastname: Miller
authors.forename: Robin Zoe
authors.initials: RZ
authors.lastname: Hayeems
authors.forename: Li
authors.initials: L
authors.lastname: Li
authors.forename: Jessica Peace
authors.initials: JP
authors.lastname: Bytautas
mesh_terms: D001290:Attitude; D003142:Communication; D003625:Data Collection; D032984:Ethics, Research; D005823:Genetics; D006801:Humans; D012108:Research Personnel / Q000941:ethics / Q000523:psychology*; D058028:Research Report; D035842:Research Subjects / Q000523:psychology