Gamete donation and anonymity: disclosure to children conceived with donor gametes should be optional

To force potential parents to tell their child of his/her genetic origin as a requirement for admission into an infertility programme is both wrong and discriminatory. In addition, comparing the practice of using donor gametes to conceive a child with adoption is incorrect for a number of reasons. In this article we make the argument that mandatory disclosure is both inappropriate and intrusive, and the presently available data do not justify a rigid position. Furthermore, no reasonable, practical system can be envisaged to guarantee compliance with mandatory disclosure. Although it is entirely reasonable at the time of consultation to encourage couples to consider their positions and obtain a mutual agreement on their future intent prior to treatment, the final decision on this should be a matter of free choice within the context of the couple's own value system.     

Choosing identity-release sperm donors: the parents' perspective 13-18 years later

BACKGROUND: A growing number of donor insemination (DI) programmes offer 'open-identity' sperm donors, who are willing to have their identity released to adult offspring. We report findings from parents who chose such donors and whose children are now adolescents. METHODS: Using mail-back questionnaires, parents from 45 households (40% headed by lesbian couples, 38% by single women, 22% by heterosexual couples) reported their experience with using an open-identity donor and disclosure about it, as well as their child's plans for donor identity-release(sm). RESULTS: Almost no parents regretted using an open-identity donor. Almost all parents had told their child about his or her DI conception early on and reported a neutral to moderately positive impact. Finally, of those who had told, almost all expected their child to obtain the donor's identity. We also discuss differences found between birth mothers and co-parents and among single women, lesbian couples, and heterosexual couples. CONCLUSIONS: Families were relatively open and positive about their use of DI and that their child could obtain the donor's identity. Disclosure did not appear to have a negative impact on the families, regardless of parental sexual orientation and relationship status.     

Embryo donation families: mothers' decisions regarding disclosure of donor conception

BACKGROUND: Previous data suggest that parents who adopt a child tend to support full disclosure while donor conception families prefer to keep the method of conception relatively private. It is not known whether parents in embryo donation families will tend towards the adoption model, therefore, we studied families with a child conceived using donated embryos. METHODS: A total of 21 embryo donation families with a child aged 2-5 years were recruited through UK fertility clinics. Mothers were administered a standardized semi-structured interview, obtaining data on the extent of their disclosure to children and other family members and their reasons for this decision. RESULTS: At the time of interview, 9% of mothers had told their child how they had conceived; 24% of mothers reported that they were planning to tell the child in future; 43% had decided that they would never tell the child, and the remaining 24% were undecided. However, nearly three-quarter of mothers (72%) had disclosed to other family members. Maternal grandparents were more likely to have been told than paternal grandparents (P < 0.025). Reasons cited for non-disclosure to the child included the desire to protect the child, the belief that disclosure is unnecessary, and the concern that family relationships would be damaged. Reasons in favour of disclosure included the desire to avoid accidental disclosure and the belief that the child has the right to know. CONCLUSIONS: Embryo donation mothers were similar to parents of donor insemination and oocyte donation children in their attitudes towards disclosure of donor conception.     

School-aged children of donor insemination: a study of parents' disclosure patterns

BACKGROUND: A major concern in relation to donor insemination (DI) is whether children should be told about their genetic origins. This study compared the thoughts, feelings and experiences of DI parents who were inclined towards openness with those who were inclined towards non-disclosure. METHODS: Forty-six families with a 4- to 8-year-old DI-conceived child were interviewed about their decision, their reasons and subsequent concerns regarding disclosure. RESULTS: Thirty-nine percent of parents were inclined towards disclosure whilst the remaining 61% were not. The two main reasons for favouring disclosure were to avoid accidental discovery and a desire for openness. Non-disclosing parents felt that there was no reason to tell and wished to protect family members. The children who had been told reacted with either curiosity or disinterest. CONCLUSIONS: In spite of donor anonymity, parents who were intending to tell their child in the future had optimistic expectations of their child's reaction. Parents who had already told their child generally described the telling experience as a positive one.     

Gamete donation and anonymity: should offspring from donated gametes continue to be denied knowledge of their origins and antecedents?

This paper presents the case for a change from the current practice of anonymity and secrecy in the use of donated gametes in medically assisted conception. It does so by describing history of the practice, various committees of enquiry over the years, their recommendations for consideration of the children created and the need for follow-up of the outcome; presenting the evidence from outcome studies both about child development and family relationships where secrecy is maintained about the child's origin and those where the practice is openly to acknowledge their origins. This is followed by an analysis of the experience and views of these children once they are adults. In discussion of the composite findings recurring themes emerge. From this it is concluded that offspring from donated gametes should not continue to be denied knowledge of their origins and antecedents. In the public debate, four schools of thought are identified. Possible practical scenarios to implement change are discussed. This paper argues that the fundamental issue regarding any of these remains-that priority in decision-making should be the lifelong well-being of the children being created.     

Non-genetic and non-gestational parenthood: consequences for parent-child relationships and the psychological well-being of mothers, fathers and children at age 3

BACKGROUND: Findings are presented of the third phase of a longitudinal study of children conceived by assisted reproduction procedures involving surrogacy and/or donor conception. METHODS: At the time of the child's third birthday, 34 surrogacy families, 41 donor insemination families and 41 oocyte donation families were compared with 67 natural conception families on standardized interview and questionnaire measures of the psychological well-being of the parents, mother-child relationships and the psychological well-being of the child. RESULTS: The differences found between family types reflected higher levels of warmth and interaction between mothers and their 3-year-old children in assisted reproduction families than in families with a naturally conceived child. A higher proportion of surrogacy parents than donor conception parents had told their children about the nature of their birth. CONCLUSIONS: It appears that the absence of a genetic and/or gestational link between parents and their child does not have a negative impact on parent-child relationships or the psychological well-being of mothers, fathers or children at age 3.     

Genomic tools for health: Secondary findings as findings to be shared

PurposeWhether and how to disclose secondary finding (SF) information to children is ethically debated. Some argue that genetic testing of minors should be limited to preserve the child’s future autonomy. Others suggest that disclosure of SFs can occur if it is in the best interests of the child. However, the ways that parents conceptualize and weigh their child’s future autonomy against the interests of their child and other family members are unknown.MethodsTo explore how parents understand SF disclosure in the context of their child and other family members’ lives, we conducted semistructured interviews with 30 families (40 parents in total). All parents had children who were enrolled in a genetic sequencing protocol that returned results by default.ResultsWe found that parents did not routinely conceptualize SFs as distinctive health information. Rather parents saw this information as part of their child’s overall health. To make decisions about disclosure, parents weighed their child’s ability to understand the SF information and their other family member’s need to know.ConclusionBecause most families desired SF information, we argue that disclosure of SF be reconceptualized to reflect the lived experiences of those who may receive this information.     

Topic avoidance and family functioning in families conceived with donor insemination

BACKGROUND: While a move away from non-disclosure and secrecy toward more openness is demonstrated in the changing practices of donor insemination worldwide, scholars and practitioners continue to debate the effects of disclosure versus secrecy. This study examines if an association exists between adult donor offspring's perceptions of their parents' use of topic avoidance to maintain secrecy, and their perceptions of their family's functioning. METHODS: Using a cross-sectional design, a convenience sample of 69 young adult donor offspring completed a demographic questionnaire, a topic avoidance scale relative to each of their rearing parents, and the Beavers Self Report Family Instrument. RESULTS: There was a moderate significant inverse correlation between family functioning and topic avoidance in general, as well as for donor insemination-related topics, for both mothers (r = -0.55, r = -0.40, respectively, P 相似文献   

Sharing information with donor insemination offspring. A child-conception versus a family-building approach

This paper suggests an innovative approach to the sharing of information between parents and their donor-conceived offspring. The 'family-building' approach is offered in the hope that it will stimulate discussion and development. Traditionally, the emphasis has been on telling the child about his/her donor conception. This has the potential to unintentionally separate the child from the parents. The family-building approach presents donor conception as an issue concerning all members of the family, thus encouraging the child to see him/herself as an integral part of this family's history. Within this approach, the semen provider is acknowledged for his contribution and for having an ongoing significance in the family. It is important, however, to clearly differentiate between him as the genitor and the child's father as the loving and nurturing male in the family. Implications for professionals include the need to acknowledge that donor insemination does not only enable a woman to become pregnant but that it creates a family with a past, present and future. Therefore it will be helpful to provide information about and explore attitudes towards this type of family-building before couples start treatment.     

Families working it out: adolescents' views on communicating about donor-assisted conception

BACKGROUND: Prompted by legislation in Victoria, Australia, permitting gamete donors to seek identifying details of people conceived from their gametes, this research investigated the views of adolescents from the general population on how parents can best talk to their donor-conceived adolescent children about their conception. METHODS: Qualitative interviews (six group discussions, n = two to six per group, and one individual interview) lasting c. 50 min with 25 secondary school students. RESULTS: Na?ve adolescents had views largely consistent with those of donor-conceived adults, for example, urging parental honesty, adaptation to individual children, and family cohesion. They identified the social father as the parent while acknowledging the significance of genetic connection to the donor. A minority asserted a preference for non-disclosure; all said that, if disclosed, it should be by parents. CONCLUSIONS: This small study contributes to increasing understanding of communication within families about donor-assisted conception.     

Taskforce 9: the application of preimplantation genetic diagnosis for human leukocyte antigen typing of embryos

This 9th statement of the ESHRE Taskforce on Ethics and Law considers ethical questions and specific dilemmas concerning preimplantation genetic diagnosis for human leukocyte antigen typing of embryos. This application is particularly complex because the interests of the sick child needing a transplantation should be balanced against the interests of the future donor child who may result from the technique. It is concluded that, if parents intend to love the child, the creation and use as a donor is not inherently disrespectful.     

Legislated right for donor-insemination children to know their genetic origin: a study of parental thinking

BACKGROUND: In Sweden, a child born as a result of donor insemination (DI) has the right to receive information both about the DI and the identity of the donor. The present study aimed to elucidate parents' thoughts regarding these possibilities, and whether, how and when they had told their offspring about the DI. An additional aim was to examine the parents' experiences of the attitudes of healthcare providers. METHODS: A follow-up study using semi-structured telephone interviews with 19 couples, including 19 women and 17 men. RESULTS: More than half of the parents (61%) had told all their child/ren about the DI, but almost everyone had told another person. Mean age for disclosure was 5 years for the first child. Reasons given for disclosure were to avoid accidental discovery, a desire for openness and a persons' fundamental right to know his/her genetic origin. Parents who did not intend to tell their child/ren considered DI a private matter and were afraid of other people's attitudes. Sixty-one percent of the parents had not yet told their children about the possibility of identifying the donor. Healthcare staff had impacted on the parents' thinking, and a majority of those who had been encouraged to tell their child/ren about the DI had done so. CONCLUSIONS: There was a discrepancy between the intentions of the legislation and how parents act in relation to them. To improve compliance, it is crucial to organize education, support and ethical discussion among professionals, and to offer parents, and parents-to-be, counselling, support and group sessions with other DI families.     

Disclosure of donor insemination to the child: the impact of Swedish legislation on couples' attitudes

The question whether or not parents of children conceived after donor insemination (DI) tell their offspring about its biological background was addressed. Swedish legislation from 1985 gives the child born after DI the right, when grown up, to receive identifying information about the sperm donor. Until now no information about compliance with the law has been available. All parents who gave birth to a child by DI after the new legislation in two major Swedish fertility centres (Stockholm and Umea) received a questionnaire containing questions about the issue of informing the child. The response rate was 80%. The majority of parents (89%) had not informed their children, whereas 59% had told someone else. As a response to an open question, 105/132 parents chose to comment on their answer about not having informed their child. Of these families, 61 intended to tell their child later, 16 were not sure and 28 were not going to inform the child. Compliance with the law must be regarded as low since only 52% of the parents had told or intended to tell their child. In addition, concern is raised about the children who run the risk of being informed by someone other than their parents.     

The importance of a genetic link in mothers commissioning a surrogate baby in the UK

Reproductive technologies have enabled genetic and gestational links between parents and children to become separate from social relationships and inter-personal ties within families. The meaning of family is discussed, by drawing on research with infertile women who become parents as the result of surrogacy. The complexities of family are highlighted by addressing the consequences of babies carried and delivered by women who are not the biological parents of the child, or by women who are the biological mother of the child but who relinquish their genetic material to another woman. In all, 29 women completed a questionnaire on various aspects of their infertility, surrogacy, and the importance of a genetic link. The study identified some characteristics of women who have become mothers as a result of surrogacy, and some of their reactions to this way of creating families. In general, women who could use their own genetic material tended to believe a genetic link was important. Those who could not use their own genetic material were less uniform in their beliefs about the importance of a genetic link. The cognitive dissonance observed in this population has implications for the future of reproductive technology assisting couples in becoming a family with or without genetic relatedness.     

What are the effects of anonymity and secrecy on the welfare of the child in gamete donation?

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.      

Ethics and Society: Donor insemination programmes with personal donors: issues of secrecy

This study involved 46 recipients and donors in personal donorprogrammes interviewed anonymously by postal questionnaire andinterview: 38% (30/80) of possible recipients responded. Thetotal number of people told about the donor involvement rangedbetween two and 78, with no significant gender difference. Relationshipshad changed for half of the participants hi the programmes with75% reporting that they had developed a closer relationshipand 25% reporting a deterioration. Contact between couples anddonors was seen as being in the original role of family friendor relative rather than as donor. An equal proportion of recipients(63%) and donors (78%) agreed to the donor being identifiedto any offspring although this was qualified with regard tothe age of the child. Reasons for identification were givenas avoidance of family secrets and the rights of the child tohave information concerning their conception. Those who didnot agree said that the child was better off not knowing, orwho wished to preserve donor anonymity. The donor group wasmore likely than the recipients to say that identification tothe child was in the best interests of the social parents becauseit allowed all those involved to feel part of a single familygroup. It was found that for both recipients and donors, theadvantages given for having a personal donor was openness withinthe relationship. For the recipients, this focused on knowledgeof the donor background and, for related couples, having a commongenetic relationship. For donors, the advantages given were:knowing the child's environment, having access to a child andthe ability to choose recipients. A disadvantage for donorsand recipients was the possibility of a change hi the relationshipand for donors an added disadvantage was having to share inthe emotional stress of the treatment and negative outcomes.More men than women placed importance on having a donor witha similar genetic background.     

Gamete donation in a system of need-adjusted reciprocity

A new paradigm to collect and allocate donor gametes is proposed. In the system, called indirect mirror exchange, the partner of the person who needs donor gametes, donates in exchange for bonus points that are awarded to the infertile person. All candidate recipients of donor gametes are ranked on a waiting list and receive points according to waiting time, medical urgency, phenotypic resemblance and contribution. According to the principle of fairness, persons who benefit from a system are obliged to contribute their share. However, strict reciprocity is rejected as unfair. A contribution by the couple is thus not a necessary condition for access to the waiting list. The system of reciprocity is adjusted by taking account of need considerations. The number of bonus points awarded to contributors should be high enough to move them to the front section of the waiting list.     

The influence of donated gametes on the incidence of hypertensive disorders of pregnancy.

Pregnancies achieved from oocyte, sperm or embryo donation are unique, since they have resulted from donor gametes that are immunologically foreign to the mother. Thus, studying the obstetric outcome of such pregnancies may shed some light on the pathophysiology of preeclampsia, particularly in women conceiving with donated embryos, since the entire fetal genome is allogenic in these pregnancies. In this retrospective cohort study, a total of 144 women were studied. Of these, 72 were infertility patients who had conceived as a result of sperm, ovum or embryo donation and the other 72 women were age- and parity-matched control patients who became pregnant with their own gametes, either spontaneously, or following intrauterine insemination with their partner's spermatozoa. Study patients were divided into three groups depending on the origin of the donated gametes. Group 1 consisted of pregnancies achieved by intrauterine insemination with washed donor spermatozoa (n = 33). Group 2 included women who conceived using donated oocytes (n = 27) and group 3 consisted of women who conceived as a result of embryo donation (n = 12). The incidence of pregnancy-induced hypertension in the donated gametes study group was 12.5% (9/72) compared with 2.8% (2/72) in the control group. In addition, pre-eclampsia was diagnosed in 18.1% (13/72) of the donated gametes study group compared to 1.4% (1/72) in the age- and parity-matched controls. The increased incidence of gestational hypertension in pregnancies resulting from donated gametes gives evidence for a maternal genetic component, with an equally strong fetal influence, in the complicated aetiology of gestational hypertension, and pre-eclampsia in particular.     

Parents' knowledge about the donors and their attitudes toward disclosure in oocyte donation

BACKGROUND: Oocyte donation is a popular treatment option among women with ovarian dysfunction. Little is known about the amount of information recipients have about their donors and if the amount of information the couple has relates to their plans to disclose. The purpose of this study was to assess the amount of information recipients had about their donors and their disclosure plans. METHODS: Sixty-two sets of oocyte donation parents from five programmes completed a self-report questionnaire. RESULTS: Ninety percent of both men and women knew their donor's age, ethnicity, hair colour, eye colour, height, weight, education and medical history. Significantly more women than men told others about using a donor to conceive, but two-thirds of women and men would not tell others if they had to do it over again. Fifty-nine percent of women and 52% of men planned to or had told their child; 34% of women and 41% of men do not plan to tell. The amount of information known about the donor was related to plans to tell the child for men only. CONCLUSION: Approximately half of couples plan to tell their child of their oocyte donor origin and a majority have told others but many regret having done so. Knowledge about the donor is related to disclosure for men only.     

A new Dutch Law regulating provision of identifying information of donors to offspring: background, content and impact

In 2004 a law was introduced in The Netherlands, which gives offspring conceived by semen or oocyte donation the right to know the identity of the donor. The law also regulates the provision of other information concerning the donor to the offspring, their parents or their general practitioner. With the introduction of this law, a choice has been made in which the wish of offspring prevails above others involved. Donors can no longer claim absolute anonymity; they are anonymous at the time of donation, but if a child aged > or =16 years requests information the donor may now be traced. During 15 years of debate on the abolition of donor anonymity the number of donors decreased by >70% and the number of semen banks by 50%. We describe the debate which led to the law, the characteristics of the law itself and note some of the probable and possible consequences for donor offspring, parents, donors and semen banks.