Design, recruitment, logistics, and data management of the GEHA (Genetics of Healthy Ageing) project.

In 2004, the integrated European project GEHA (Genetics of Healthy Ageing) was initiated with the aim of identifying genes involved in healthy ageing and longevity. The first step in the project was the recruitment of more than 2500 pairs of siblings aged 90 years or more together with one younger control person from 15 areas in 11 European countries through a coordinated and standardised effort. A biological sample, preferably a blood sample, was collected from each participant, and basic physical and cognitive measures were obtained together with information about health, life style, and family composition. From 2004 to 2008 a total of 2535 families comprising 5319 nonagenarian siblings were identified and included in the project. In addition, 2548 younger control persons aged 50-75 years were recruited. A total of 2249 complete trios with blood samples from at least two old siblings and the younger control were formed and are available for genetic analyses (e.g. linkage studies and genome-wide association studies). Mortality follow-up improves the possibility of identifying families with the most extreme longevity phenotypes. With a mean follow-up time of 3.7 years the number of families with all participating siblings aged 95 years or more has increased by a factor of 5 to 750 families compared to when interviews were conducted. Thus, the GEHA project represents a unique source in the search for genes related to healthy ageing and longevity.

Fresh embryo donation for human embryonic stem cell (hESC) research: the experiences and values of IVF couples asked to be embryo donors.

BACKGROUND: This article reports on an investigation of the views of IVF couples asked to donate fresh embryos for research and contributes to the debates on: the acceptability of human embryonic stem cell (hESC) research, the moral status of the human embryo and embryo donation for research. METHODS: A hypothesis-generating design was followed. All IVF couples in one UK clinic who were asked to donate embryos in 1 year were contacted 6 weeks after their pregnancy result. Forty four in-depth interviews were conducted. RESULTS: Interviewees were preoccupied with IVF treatment and the request to donate was a secondary consideration. They used a complex and dynamic system of embryo classification. Initially, all embryos were important but then their focus shifted to those that had most potential to produce a baby. At that point, 'other' embryos were less important though they later realise that they did not know what happened to them. Guessing that these embryos went to research, interviewees preferred not to contemplate what that might entail. The embryos that caused interviewees most concern were good quality embryos that might have produced a baby but went to research instead. 'The' embryo, the morally laden, but abstract, entity, did not play a central role in their decision-making. CONCLUSIONS: This study, despite missing those who refuse to donate embryos, suggests that debates on embryo donation for hESC research should include the views of embryo donors and should consider the social, as well as the moral, status of the human embryo.

Demographic, medical and treatment characteristics associated with couples' decisions to donate fresh spare embryos for research.

BACKGROUND: Isolation of human embryonic stem cell lines has opened a promising and pioneering area of basic and applied medical research. The issues in relation to a couples' decision in donating their supernumerary embryos for research need to be investigated further. METHODS: We carried out a prospective study of 300 couples who underwent IVF/ICSI treatment cycles in our unit. We analysed various factors contributing to their decision to consent to donate spare embryos for stem cell or preimplantation genetic diagnosis research. RESULTS: The majority of couples (54%) consented to donate their surplus embryos for research. Couples of ethnic minority origin were less willing to consent for research compared to Caucasian couples. The number of ovarian follicles at pre-hCG scan and the number of embryos obtained were significantly higher in couples consenting for research. The funding source of treatment did not appear to influence the decision to donate. Couples with previous failed fertilization were less likely to consent to embryo research. CONCLUSIONS: Physical characteristics based on ovarian response during a treatment cycle may positively influence a couple's decision to donate embryos. Further studies are needed to identify those couples who are likely to agree to research so that counselling for research can be directed efficiently.

Do clinicians benefit from gamete donor anonymity?

Two groups of participants are frequently omitted from discussions and studies of donor anonymity in assisted conception: the children conceived and the clinicians providing the service. Past secrecy explains the absence of the children's views, but the absence of a systematic consideration of the clinician's views is more puzzling. Evidence from the history of donor insemination suggests that clinicians have supported keeping such practices secret, not just for the protection of donors, recipients and resultant children but also to protect their own position from the detailed scrutiny of others who had expressed doubts about the practice. However, the various important developments in both the practice and the regulation of assisted conception in the 1980s and the early 1990s may well have alleviated such earlier anxieties. None the less, a growing willingness by clinicians to consider greater openness in gamete donation may be counter-balanced by the nature of their relationship with recipients, the majority of whom still appear to favour secrecy, and by the wider cultural uncertainty about the physiological and symbolic importance of genetic relationships in the development of the individual. It is concluded therefore that future studies of donor anonymity should include clinicians, in order to explore these questions in detail.

Issues of gender in gamete donation.

Gamete donation refers to the practice whereby either semen or eggs are donated by a third party to enable infertile individuals or couples to become parents. This paper examines the way in which gender is deployed as a resource for organizing the meanings attached to that practice. The gender aspects of gamete donation are not always immediately apparent since semen and egg donation are often described as being essentially the same. However, a closer examination indicates that behind the claim of equivalence lies a set of unstated assumptions about their difference. These assumptions are tied to ideas about the ways in which men and women are thought to behave more generally in relation to reproduction and the family. This paper draws on two sources of empirical data to reveal how these assumptions are used: first, data from a detailed analysis of the Warnock Report (established by the British Government in 1982 to inquire into and make recommendations on techniques of human fertilization and embryology), which includes a cross-national and historical comparison with other government reports; second, data from a series of in-depth interviews with members of the Warnock Committee. The analysis of the reports suggests that historically semen donation was associated with 'deviant' sexuality (masturbation, adultery, illegitimacy) though paradoxically the extant nature of semen donation was then used to justify the acceptance of egg donation in later reports. This is despite the fact that in these later reports there are clear, albeit implicit, distinctions drawn between the two procedures in terms of donor motivation, the risks of being a donor, and the consequences of donation.(ABSTRACT TRUNCATED AT 250 WORDS)

'Secrecy': what can artificial reproduction learn from adoption?

Frequent comparisons are made between adoptive families and those families formed through artificial means of reproduction, particularly those involving sperm and egg donation. It is claimed that problems from the latter arising out of the extent of the child's knowledge of his/her parentage may be handled with reference to the solutions found within adoption to similar problems. This paper examines those claims and questions the initial premise. It argues that problems remain within British adoption on the issue of openness, at the level of legislation, administration and professional practice. It argues that problems remain because of an uneasiness which still persists about adoption as an institution. Moves to make the practice of adoption more open have, in effect, disguised but not eliminated the uneasiness. An attempt to extend those 'solutions' to artificial reproduction might (a) suggest similar ambivalence about those practices and (b) lead to claims which again disguise rather than solve those ambiguities. The paper concludes therefore that adoption might be a useful precedent for artificial reproduction but more in the way it poses questions which remain to be answered, than as a source of solutions for direct application.