title: Sharing genetic origins information in donor assisted conception: views from licensed centres on HFEA donor information form (91) 4.
abstract: Section 31 of the Human Fertilization and Embryology Act 1990 permits people born as a result of licensed treatments provided in the UK to seek certain information about their genetic origins held on the Human Fertilization and Embryology Authority (HFEA) Register of Information. The precise nature of such information is to be specified in Regulations that have yet to be determined by the Secretary of State. The Register comprises data submitted to the Authority by licensed centres on HFEA Donor Information Form (91) 4. This paper reports on a survey of views of licensed centres concerning the adequacy of this form and centres' experiences of gathering information from donors. The survey shows that centres' experiences vary considerably, and the authors argue that there is a case for the sharing of centres' experiences and dissemination of effective strategies. The paper further discusses the nature of information that might become available to individuals seeking information from the HFEA. While requests for non-identifying information concerning the donor cannot be made prior to 2010, any information made available then is inevitably dependent on current practice in centres. The authors conclude that current variability in practice does not best serve the interests of donor offspring who may seek information about their genetic origins.
authors.affiliation: School of Human and Health Sciences, University of Huddersfield, UK.
authors.forename: E
authors.initials: E
authors.lastname: Blyth
authors.forename: J
authors.initials: J
authors.lastname: Hunt
mesh_terms: D001290:Attitude; D003219:Confidentiality; D030881:Disclosure; D005260:Female; D030661:Genetic Privacy; D005823:Genetics; D033161:Government Regulation; D006291:Health Policy; D006801:Humans; D033181:Information Dissemination; D008297:Male; D018587:Oocyte Donation; D011996:Records; D012042:Registries; D012099:Reproductive Techniques / Q000331:legislation & jurisprudence; D013094:Spermatozoa; D011795:Surveys and Questionnaires; D014019:Tissue Donors / Q000331:legislation & jurisprudence*; D006113:United Kingdom