title: Producing sperm, egg and embryo donors' pen portraits and other personal information for later use by donor offspring: an exploratory study of professional practices.
abstract: This study considered professional input into collecting personalized donor information for later release to donor offspring. Existing studies report the importance of such information for identity completion, to satisfy curiosity, and to allay anxiety about genetic inheritance. The study used a three-pronged approach: a literature search of professional practices in this and related fields; key informant telephone interviews with donor-conceived adults, sperm and egg donors, and professionals and a postal survey of UK clinics' practices and views. The literature revealed only one previous study, which suggested gendered approaches to pen portraits were used in commercial donor banks. Key informants agreed on the importance of information for offspring well-being and the need for support services in its compilation and on release. Donors reported inadequate professional assistance to date. The postal survey of clinics revealed variable practices in the process of acquiring and storing later life information and variable success in achieving its completion. Respondents identified factors that hinder completion (donor anxiety, lack of guidance, shortage of staff time) and factors that help (donor belief in the importance of later life information, staff belief, dedicated staff time). Further research, including intervention studies, is needed into the processes and skills involved in collecting later life information.
authors.affiliation: University of York, 50 Middlethorpe Grove, York, UK. marilyn.crawshaw@york.ac.uk
authors.forename: Marilyn
authors.initials: M
authors.lastname: Crawshaw
authors.forename: Jacqui
authors.initials: J
authors.lastname: Dally
mesh_terms: D022126:Access to Information / Q000331:legislation & jurisprudence; D030881:Disclosure / Q000592:standards; D004622:Embryo, Mammalian; D005260:Female; D030661:Genetic Privacy / Q000331:legislation & jurisprudence; D006801:Humans; D008297:Male; D018587:Oocyte Donation; D010818:Practice Patterns, Physicians' / Q000592:standards*; D012042:Registries; D013094:Spermatozoa; D011795:Surveys and Questionnaires; D014019:Tissue Donors; D006113:United Kingdom