Title: The management of genetic origins: secrecy and openness in donor assisted conception in Israel and elsewhere
Author(s): R Landau
Journal: Human Reproduction, 13 (11): 3268-3273, 1998
Donor assisted conception provides new opportunities for achieving parenthood but at the same time raises issues of secrecy, anonymity, and the management of the offspring's genetic origins. As with adoption, the child's right to a genetic identity is at stake. The first part of this paper examines bio-psychosocial evidence indicating that maintaining secrecy and anonymity regarding genetic parents may be detrimental to the well-being of the donor offspring, the donor, and the nurturing, social parents. The second part discusses different approaches to the disclosure of genetic origins. The third part presents the case of Israel, as reflected mainly in the Report of the Israeli Ministry of Justice (1994). The paper shows that the Committee, yielding to the medical profession in the country, preferred the interests of the adults involved in donor assisted conception to those of the offspring and made no sincere attempts to protect the child's basic right to genetic identity. In doing so, it turned its back on the well established policy of openness in the field of adoption and on the emerging trend to similar openness in donor assisted conception in other countries.
Key words: anonymity/donor assisted conception/ethics/genetic origins/secrecy
Title: Sharing genetic origins information in donor assisted conception: views from licensed centres on HFEA donor information form (91) 4
Authors: E Blyth and J Hunt
Journal: Human Reproduction, 13 (11): 3274-3277, 1998
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.
Key words: anonymity/donor offspring/gamete donors/genetic origins information/policy
Title: Should sperm donors be paid? a survey of the attitudes of the general public
Authors: H Lyall, GW Gould and IT Cameron
Journal: Human Reproduction, 13 (3): 771-775, 1998
Gamete donation in assisted reproduction is an accepted treatment option for certain infertile couples. Traditionally, men donating spermatozoa have been paid a nominal fee, whilst women donating oocytes have not. The issue of payment for sperm donors has recently attracted attention following the Human Fertilisation and Embryology Authority's (HFEA) suggestion that such payment may be withdrawn. Prior to the final meeting of the HFEA working party which is examining this issue, here we report the results of a survey designed to solicit opinion on whether sperm donors should be paid, to identify social or other factors which influence this opinion, and to examine the influence of financial incentive on potential donors. We surveyed 717 individuals in three distinct groups: the general public, students (potential donors), and infertility patients (potential recipients). The majority of the potential donor group (students) was in favour of paying sperm donors, as were infertility patients. In contrast the general public was not. The opinion of the general public on this issue was influenced by their prior knowledge of whether donors were paid: those of the general public favouring the payment of sperm donors had a prior awareness that such payments were made. Although not in favour of paying sperm donors, the general public overwhelmingly approved of the use of donated spermatozoa for the treatment of infertile couples, and thought that ways should be sought to increase the availability of donor spermatozoa for the treatment of infertility and for research purposes. Within the potential donor group (students), the majority indicated that financial reward was an important factor which would influence their decision to donate spermatozoa. As the majority of both the potential recipients and potential donors feels that sperm donors should be paid, perhaps the views of these groups should carry significant weight when the decision whether or not to withdraw payment is taken. This is especially the case in view of the fact that the majority of the general public is in favour of the use of donated spermatozoa for the treatment of infertile couples.
Key words: attitudes/gamete donation/payment/sperm donors
Authors: R Landau
Title: Gamete donation: ethics led clinical practice. Ethical implications for donors
Authors: F Shenfield
Journal: Human Fertility (Journal of the British Fertility Society) in press, 1998
Title: Gamete donation guidelines. The Corsendonk consensus document for the European Union
Authors: C Barratt, Y Englert, C Gottlieb and P Jouannet
Journal: Human Reproduction, 13 (2): 500-501, 1998
Title: The 'double-track' policy for donor anonymity.
Authors: G Pennings
Journal: Human Reproduction, 12 (12): 2839-2844, 1997
Although there is no evidence that any one policy is the best solution, clinics as well as legislators tend to impose one position about donor anonymity on all participants. The most evident alternative policy is to let the parties decide for themselves. Donors may choose between anonymity or identification and recipients can opt for an anonymous or identifiable donor. This 'double track' policy for anonymity represents the best attempt to balance the rights of donors, recipients and donor offspring. The procedure reflects the plurality of visions and the absence of an independent standard to decide which one is best.
Keywords: anonymity/donor/ethics/policy/sperm donation
Title: Semen donor recruitment strategies - a non-payment based approach
Authors: KR Daniels and DJ Hall Journal: Human Reproduction, 12 (10): 2330-2335, 1997
Actual and projected prohibition of payment for semen donation in the UK and Canada has increased the need to examine alternative methods of donor recruitment. Evidence from a number of sources suggests that there is a large group of current and potential donors who are motivated more by meeting esteem needs than by payment. We develop an argument for using social marketing tools to create systematically an esteem-based approach to donor recruitment as an alternative to the payment approach. We conclude that esteem is a useful method of reciprocating the gift that donors make.
Keywords: donor insemination/payment/recruitment/semen donors/social marketing
Title: Payments to gamete donors. Payments to gamete donors: position of the Human Fertilisation and Embryology Authority
Authors: M. Johnson
Journal: Human Reproduction, 12 (9): 1839-1842, 1997.
Title: Payments to gamete donors. The internal coherence of donor insemination practice: attracting the right type of donor without paying
Authors: G Pennings Journal: Human Reproduction, 12 (9): 1842-1844, 1997
Disallowing payment may result in the recruitment of a type of donor which no longer fits into the scheme for which the donor insemination practice is designed. The donor should give with the intention to help others but without wishing to become involved in the receiving family (unless this is also desired by that family). Withdrawing payment guarantees that financial reasons do not guide the donor’s behaviour but it does not assure good motives. These remarks should not be taken to imply that payment should be maintained. On the contrary, they are meant to make the transition pass off more smoothly by preventing that one overstresses the involvement of the altruistic donor and thus comes into conflict with the basic goal of the practice.
Title: Payments to gamete donors. Reproductive prohibition: restricting donor payment will lead to medical tourism
Authors: MV Sauer
Journal: Human Reproduction, 12 (9): 1844-1845, 1997.
Title: Payments to gamete donors. Payment or altruism? The motivation behind gamete donation
Authors: MR Gazvani, SJ Wood, AJM Thomson, CR Kingsland and DI Lewis-Jones
Journal: Human Reproduction, 12 (9): 1845-1846, 1997.
Title: Donor insemination: Dutch parents' opinions about confidentiality and donor anonymity and the emotional adjustment of their children
Authors: A Brewaeys, S Golombok, N Naaktgeboren, JK de Bruyn and EV van Hall
Journal: Human Reproduction, 12 (7): 1591-1597, 1997
Results from a comparative study investigating 38 donor insemination (DI) Dutch families with 4-8 year old children are presented. The aims of this study were to investigate parents' opinions on the issues of confidentiality and donor anonymity, to assess the emotional development of the children, and to examine in DI families the association between secrecy with regard to the use of a donor and the emotional adjustment of the children. The DI families were compared to families with a child conceived by in-vitro fertilization (IVF) and to families with a naturally conceived child. Secrecy appeared to be associated with DI and not with IVF: 74% of the DI parents intended not to inform the child about the way in which she/he was conceived, whereas none of the IVF parents intended to keep the secret. Only one set of DI parents and two sets of IVF parents had actually told the child. As to donor anonymity, a spread of opinions appeared among DI parents; 57% preferred an anonymous donor, 31% would have liked non-identifying information about the donor, 9% preferred the donor's identity to be registered and 3% remained unsure. Parents' major concern was to know more about the medical/genetic background of the donor. Mothers and fathers in the DI families differed in their opinions concerning the issues of confidentiality and donor anonymity: fathers, more often than mothers, were secretive with regard to the use of a donor and husbands, more often than their wives, were in favour of donor anonymity. With regard to the emotional development of children, more emotional/behavioural problems were revealed among DI children than among children who were naturally conceived. No association was found between secrecy and the emotional/behavioural adjustment of the children.
Keywords: child development/confidentiality/donor anonymity/donor insemination
Title: Donor insemination: child development and family functioning in lesbian mother families
Authors: A Brewaeys, I Ponjaert, EV Van Hall and S Golombok
Journal: Human Reproduction, 12 (6): 1349-1359, 1997
Findings are presented of a comparative study investigating the family relationships and the emotional and gender development of children raised in lesbian mother families. A total of 30 lesbian mother families with 4-8 year old children created as a result of donor insemination (DI) were compared with 38 heterosexual families with a DI child and with 30 heterosexual families who had a naturally conceived child. A variety of assessment measures, including a standardized interview and questionnaires from the parents and psychological testing of the child were used to collect the data. The quality of the couples' relationships and the quality of the mother-child interaction did not differ between lesbian mother families and either of the heterosexual family groups. The quality of the interaction between the social mother and the child in lesbian families was superior to that between the father and the child in both groups of heterosexual families. Childrens' own perception of their parents was similar in all family types; the social mother in lesbian families was regarded by the child to be as much a 'parent' as the father in both types of heterosexual families. With regard to their emotional/behavioural development, boys and girls raised in lesbian mother families were well adjusted and their gender role development did not differ from that of children raised in heterosexual families. These results indicate that child and family development in lesbian mother families is similar to that of heterosexual families.
Keywords: donor insemination/follow-up study/lesbian mothers/psychology
Title: What are the effects of anonymity and secrecy on the welfare of the child in gamete donation?
Authors: F Shenfield and SJ Steele Journal: Human Reproduction, 12 (2): 392-395, 1997
A perennial concern when using donated gametes in infertility treatment is the effect on the child and his/her family of the traditional anonymity of the donor, and of the secrecy of the procedure. As all involved, from potential parents to carers, wish to maximize the 'welfare of the child' born of gamete donation, conflicting attitudes, sometimes translated into diverging legislations in Europe, are analysed. In the face of the lack of evidence on the consequences of secrecy or openness, it is concluded that future parents are best placed to decide on this matter for the potential children.
Keywords: anonymity/gamete donation/legislation/secrecy/welfare of the child
Title: The donor's right to retire. Second pregnancies and the donor's right to retire
Authors: G Pennings Journal: Human Reproduction, 11 (12): 2569-2572, 1996
It is argued that a sperm donor has the right to withdraw at any time all the genetic material that belongs to him on the condition that it has not been used. The gametes are considered as used for those women or couples who conceived by his sperm. For these recipients his sperm acquires a unique value. If the desire of couples to have an additional child from the same donor is considered legitimate, the recipients should have the possibility to reserve a part of the genetic material of their donor for personal use. This limits the donor’s right to withdraw his consent for the further use of his gametes.
Title: Donor insemination programmes with personal donors: issues of secrecy
Authors: VA Adair and A Purdie Journal: Human Reproduction, 11 (11): 2558-2563, 1996
This study involved 46 recipients and donors in personal donor programmes interviewed anonymously by postal questionnaire and interview: 38% (30/80) of possible recipients responded. The total number of people told about the donor involvement ranged between two and 78, with no significant gender difference. Relationships had changed for half of the participants in the programmes with 75% reporting that they had developed a closer relationship and 25% reporting a deterioration. Contact between couples and donors was seen as being in the original role of family friend or relative rather than as donor. An equal proportion of recipients (63%) and donors (78%) agreed to the donor being identified to any offspring although this was qualified with regard to the age of the child. Reasons for identification were given as avoidance of family secrets and the rights of the child to have information concerning their conception. Those who did not agree said that the child was better off not knowing, or who wished to preserve donor anonymity. The donor group was more likely than the recipients to say that identification to the child was in the best interests of the social parents because it allowed all those involved to feel part of a single family group. It was found that for both recipients and donors, the advantages given for having a personal donor was openness within the relationship. For the recipients, this focused on knowledge of the donor background and, for related couples, having a common genetic relationship. For donors, the advantages given were: knowing the child's environment, having access to a child and the ability to choose recipients. A disadvantage for donors and recipients was the possibility of a change in the relationship and for donors an added disadvantage was having to share in the emotional stress of the treatment and negative outcomes. More men than women placed importance on having a donor with a similar genetic background.
Keywords: AID/donor/personal/secrecy/information
Title: Guide to donor insemination and IVF clinics. A patient's guide or a government league table?
Authors: HS Jacobs and HI Abdalla
Journal: Human Reproduction, 11 (9): 1835-1836, 1996.
Title: Attitudes and motives of semen donors and non-donors
Authors: SC Lui and SM Weaver Journal: Human Reproduction, 11 (9): 2061-2066, 1996
This study surveyed the views of the three groups of men in relation to the situation of semen donation. In all, 97 childless student semen donors, 56 childless non-donor students and 44 mature non-donor fathers completed a questionnaire designed to explore possible motives for donating semen and preferences for involvement with recipients and offspring. Results showed the three groups could be discriminated with respect to their views about motivation and involvement in a number of ways. The major findings were: (i) relatively more donors than non-donors endorsed the importance of financial incentives for donating; (ii) non-donors, who were also fathers, favoured involvement with recipients and offspring more often than did non-fathers (donors and non-donor students); (iii) all groups expressed the importance of confidentiality and guaranteed anonymity. These results are discussed in relation to strategies for donor-recruitment.
Keywords: attitudes/fathers non-donors/semen donors/students non-donors