title: Expectations and experiences of gamete donors and donor-conceived adults searching for genetic relatives using DNA linking through a voluntary register.
abstract: OBJECTIVE
  What are the experiences of donor-conceived adults and donors who are searching for a genetic link through the use of a DNA-based voluntary register service?
  
  
  CONCLUSIONS
  Donor-conceived adults and donors held positive beliefs about their search and although some concerns in relation to finding a genetically linked relative were reported, these were not a barrier to searching.
  
  
  BACKGROUND
  Research with donor-conceived people has consistently identified their interest in learning about-and in some cases making contact with-their donor and other genetic relatives. However, donor-conceived individuals or donors rarely have the opportunity to act on these desires.
  
  
  METHODS
  A questionnaire was administered for online completion using Bristol Online Surveys. The survey was live for 3 months and responses were collected anonymously.
  
  
  METHODS
  The survey was completed by 65 donor-conceived adults, 21 sperm donors and 5 oocyte donors who had registered with a DNA-based voluntary contact register in the UK. The questionnaire included socio-demographic questions, questions specifically developed for the purposes of this study and the standardized Aspects of Identity Questionnaire (AIQ).
  
  
  RESULTS
  Motivations for searching for genetic relatives were varied, with the most common reasons being curiosity and passing on information. Overall, participants who were already linked and those awaiting a link were positive about being linked and valued access to a DNA-based register. Collective identity (reflecting self-defining feelings of continuity and uniqueness), as assessed by the AIQ, was significantly lower for donor-conceived adults when compared with the donor groups (P < 0.05), but not significantly different between linked/not linked or length of time since disclosure of donor conception (all Ps > 0.05) for donor-conceived adults.
  
  
  CONCLUSIONS
  Participants were members of a UK DNA-based registry which is unique. It was therefore not possible to determine how representative participants were of those who did not register for the service, those in other countries or of those who do not seek information exchange or contact.
  
  
  CONCLUSIONS
  This is the first survey exploring the experiences of donor-conceived adults and donors using a DNA-based voluntary register to seek information about and contact with genetic relatives and the first to measure aspects of identity using standardized measures. Findings provide valuable information about patterns of expectations and experiences of searching through DNA linking, identity and of having contact in the context of donor conception that will inform future research, practice and policy development.
  
  
  BACKGROUND
  No funding was obtained for this study. The authors have no competing interests to declare except for M.C. who was national adviser to UKDL from 2003-2013.
  
  
  BACKGROUND
  Not applicable.
authors.affiliation: Department of Psychology, Middlesex University, London NW4 4BT, UK o.vandenakker@mdx.ac.uk.
authors.forename: O B A
authors.initials: OB
authors.lastname: van den Akker
authors.affiliation: Department of Social Policy & Social Work, University of York, York, UK.
authors.forename: M A
authors.initials: MA
authors.lastname: Crawshaw
authors.affiliation: School of Human and Health Sciences, University of Huddersfield, Huddersfield, UK.
authors.forename: E D
authors.initials: ED
authors.lastname: Blyth
authors.affiliation: Department of Health Services Research, University of Liverpool, Liverpool, UK.
authors.forename: L J
authors.initials: LJ
authors.lastname: Frith
mesh_terms: D000328:Adult; D003219:Confidentiality; D004247:DNA; D030881:Disclosure; D005260:Female; D006801:Humans; D007316:Insemination, Artificial, Heterologous; D008297:Male; D009042:Motivation; D018587:Oocyte Donation / Q000523:psychology*; D012042:Registries; D014019:Tissue Donors / Q000523:psychology*
chemical_list: D004247:DNA
keywords: UK donor link; donor register; donor searching; gamete donation; identity