Legal age limits in accessing donor information: experiences of donor-conceived people, parents, sperm donors and counsellors.

RESEARCH QUESTION: What are the lived experiences of donor-conceived people, parents, sperm donors and counsellors related to legal age limits on accessing donor information in the Netherlands? DESIGN: A phenomenological study was carried out that included 20 donor-conceived individuals, 15 parents, 6 sperm donors and 5 counsellors. Data were collected through online qualitative in-depth interviews and focus groups. The data were analysed using Dahlberg's Reflective Lifeworld Approach. RESULTS: The results show how: (i) age limits create challenges related to dependency, autonomy and loyalty to parents; (ii) donor information can be important for identity development, which looks different at different ages; (iii) inaccessible information can lead to unfair loss and may be perceived as negative; (iv) relational stability provides a good foundation for dealing with the (in)accessibility of donor information; (v) procedural barriers and age limits increase the inaccessibility of donor information; and (vi) comprehensive counselling is desired for donor-conceived individuals, parents and donors. CONCLUSIONS: This study shows that legal age limits on accessing donor information can lead to several negative consequences. The age limits focus on one individual, which is not appropriate for questions about ancestry that always pertain to a relational network. Counselling should be tailored to the child's needs, and the child's family should be involved. Furthermore, the donor should receive independent counselling.

The limits of evidence: evidence based policy and the removal of gamete donor anonymity in the UK.

This paper will critically examine the use of evidence in creating policy in the area of reproductive technologies. The use of evidence in health care and policy is not a new phenomenon. However, codified strategies for evidence appraisal in health care technology assessments and attempts to create evidence based policy initiatives suggest that the way evidence is used in practice and policy has changed. This paper will examine this trend by considering what is counted as 'good' evidence, difficulties in translating evidence into policy and practice and how evidence interacts with principles. To illustrate these points the removal of gamete donor anonymity in the UK in 2005 and the debates that preceded this change in the law will be examined. It will be argued that evidence will only ever take us so far and attention should also be paid to the underlying principles that guide policy. The paper will conclude with suggestions for how underlying principles can be more rigorously used in policy formation.

Gamete donors' expectations and experiences of contact with their donor offspring.

STUDY QUESTION: What are the expectations and experiences of anonymous gamete donors about contact with their donor offspring? SUMMARY ANSWER: Rather than consistently wanting to remain distant from their donor offspring, donors' expectations and experiences of contact with donor offspring ranged from none to a close personal relationship. WHAT IS KNOWN ALREADY: Donor conception is part of assisted reproduction in many countries, but little is known about its continuing influence on gamete donors' lives. STUDY DESIGN, SIZE, DURATION: A qualitative research model appropriate for understanding participants' views was employed; semi-structured interviews were conducted during January-March 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS: Before 1998, gamete donors in Victoria, Australia, were subject to evolving legislation that allowed them to remain anonymous or (from 1988) to consent to the release of identifying information. An opportunity to increase knowledge of donors' expectations and experiences of contact with their donor offspring recently arose in Victoria when a recommendation was made to introduce mandatory identification of donors on request from their donor offspring, with retrospective effect. Pre-1998 donors were invited through an advertising campaign to be interviewed about their views, experiences and expectations; 36 sperm donors and 6 egg donors participated. MAIN RESULTS AND THE ROLE OF CHANCE: This research is unusual in achieving participation by donors who would not normally identify themselves to researchers or government inquiries. Qualitative thematic analysis revealed that most donors did not characterize themselves as parents of their donor offspring. Donors' expectations and experiences of contact with donor offspring ranged from none to a close personal relationship. LIMITATIONS, REASONS FOR CAUTION: It is not possible to establish whether participants were representative of all pre-1998 donors. WIDER IMPLICATIONS OF THE FINDINGS: Anonymous donors' needs and desires are not homogeneous; policy and practice should be sensitive and responsive to a wide range of circumstances and preferences. Decisions made to restrict or facilitate contact or the exchange of information have ramifications for donors as well as for donor-conceived people. STUDY FUNDING/COMPETING INTEREST(S): The study was funded by the Victorian Department of Health. The authors have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER: Not applicable.

ESHRE Task Force on Ethics and Law 21: genetic screening of gamete donors: ethical issues.

This Task Force document explores the ethical issues involved in the debate about the scope of genetic screening of gamete donors. Calls for expanded donor screening arise against the background of both occasional findings of serious but rare genetic conditions in donors or donor offspring that were not detected through present screening procedures and the advent of new genomic technologies promising affordable testing of donors for a wide range of conditions. Ethical principles require that all stakeholders' interests are taken into account, including those of candidate donors. The message of the profession should be that avoiding all risks is impossible and that testing should remain proportional.

[Extension of assisted reproductive technologies with donor sperm (ARTD) to non-medical indications]. / Ouverture de l'assistance médicale à la procréation avec sperme de donneur (AMPD) à des indications non médicales.

In France as in other countries, more and more single women and lesbian couples wish to become mothers. To carry through their parenting project they may consult a physician in France and often go abroad in order to get Assisted Reproductive Technologies with donor sperm (ARTD). Should ARTD be available to those women in France? The physician has not to take the decision. In such situations ARTD has no medical indication or contraindication. This assisted procreation raises many questions on children development and well-being. The results of studies made in other countries are often reassuring but their methodologies do not allow any conclusion to be drawn and grey areas persist. Therefore it should be necessary to develop a research effort in the field as it recently started in France. Would ARTD access to women without a male partner be legalized, the law should respect the ethical principles of non-payment and anonymity associated with donation of all body components. In any case, it should also allow an efficient medical care to be performed to ensure under the best conditions the well-being of the children and their mothers.

Numerical limits in donor conception regimes: genetic links and 'extended family' in the era of identity disclosure.

This article critically examines the setting of limits on the number of children or family groups that may be formed with a single donor in assisted conception regimes. Originally, under conditions of anonymity, numerical limits were said to contain the risk of inadvertent consanguinity between offspring who would not know, and could not know, that they were genetic half siblings, and also between donor and offspring. The increasing embrace of identity disclosure regimes has led to calls for stricter numerical limits based on the purported harm of being exposed to 'too many' genetic relatives in the future. This article asks: how many is too many? And how do we know? The UK and Australian positions are examined, and placed alongside a discussion of qualitative research involving interviews with twenty parents of donor conceived children.

Sperm donor recruitment, attitudes and provider practices--5 years after the removal of donor anonymity.

STUDY QUESTION: Has the change in donor anonymity legislation in UK affected the recruitment of men wanting to be sperm donors and also affected the attitudes of the practitioners who provide donor sperm treatment? SUMMARY ANSWER: We have performed fewer IUI and IVF treatments using donor sperm following the change in legislation in April 2005 than before. However, we have seen an overall increase in men wanting to donate their sperm, including a small increase in men from ethnic minorities. WHAT IS KNOWN ALREADY: Sweden, which removed donor anonymity in 1985, had an initial drop in men wanting to donate and then 10 years later started to have an increase. The Human Fertilisation and Embryology Authority (HFEA) and other studies in the UK have shown an overall downward trend, but have not been able to compare large time scales either side of the change in legislation. STUDY DESIGN, SIZE, DURATION: This was a retrospective descriptive study that looked at all men who approached the clinic between the years 2000 and 2010, i.e. 5 years either side of the change in legislation (April 2005). Overall, we had 24 men wanting to be donors prior to the rule change and 65 men after the rule change. We also investigated the total number of all treatments with donor sperm, and this included a total of 1004 donor sperm treatments prior to the change in legislation and 403 donor sperm treatments after the change in legislation. PARTICIPANTS, SETTING, METHODS: The study was set in an NHS IVF clinic in South East London. We compared the indicators of service provision, provider practices and donor attitudes, in the period between April 2000 and March 2005 (Group A) with those between April 2005 and March 2010 (Group B), i.e. 5 years either side of the change in legislation. MAIN RESULTS: There were 875 IUI treatments and 129 IVF or ICSI treatments in Group A and 325 IUI and 78 IVF/ICSI treatments in Group B with the use of donor sperm, of which, 11.9% (119 out of 1004) in Group A and 39.5% (159 out of 403) in Group B were with donor sperm recruited by our unit. The clinical pregnancy rate per cycle of treatment in Group A was (86 out of 875) 9.8% for IUI and (27 out of 129) 20.9% for IVF/ICSI and in Group B (32/325) 9.8% and (28 out of 78) 35.9%, respectively. There was a sharp yearly fall in donor sperm treatments from 2004. Twenty-four men were screened in Group A, of which 18 (75.0%) were recruited for long-term storage and 12 (50%) were registered as donors with the HFEA when the sperm was used, whereas in Group B, 65 men were screened, 53 (82.0%) were recruited and 24 (36.92%) were registered as donors. Six (24.0%) men in Group A failed in screening because of poor semen analysis when compared with 9 (13.8%) men in Group B. The majority of post-recruitment dropouts were because of loss of follow-up or withdrawal of consent. More donors in Group A were white (92.0 versus 77.0%) and born in UK (92.0 versus 68.0%) when compared with those in Group B. Donors in Group B were more likely to be single (46.0 versus 4.0%) and to have informed their relevant partner of donation (71.0 versus 54.0%) when compared with those in Group A. 83.0% of donors in Group A were heterosexual when compared with 69.0% in Group B. The primary reason for donating in both groups of potential donors was 'wanting to help' (46.0% 'altruistic donors' in Group A versus 72.0% in Group B). Fewer donors in Group B (37%) had specific restrictions about the use of their sperm when compared with 46.0% in Group A. LIMITATIONS, REASONS FOR CAUTION: As this was a retrospective study, there is a chance for the introduction of bias. WIDER IMPLICATIONS OF THE FINDINGS: We have shown that despite no active in-house recruitment procedures, we are managing to recruit more potential sperm donors after the change in UK legislation, and we are able to meet the demand for treatments with in-house recruited donor sperm that is a reassuring finding for donor sperm treatment services in the wider UK. FUNDING/COMPETING INTERESTS: No external funds were sought for this work. None of the authors have any competing interests to declare.

"Obligated aliens": recognizing sperm donors' ethical obligation to disclose genetic information.

Sperm donors' obligations are typically constrained to the immediate circumstances surrounding the donation and to its time frame. This paper makes the case for recognizing an ongoing ethical obligation that binds sperm donors to disclose, in a timely manner, meaningful genetic information to recipients and donor-conceived children. The paper delineates and conceptualizes the suggested (potentially reciprocal) duty and argues that it is not the genetic link between the donor and the donor-conceived child that binds donors by said duty, but rather social responsibility. Accordingly, an original perception of the donor as an obligated alien is suggested and developed. The main thesis of the paper is supported inter alia by a comparison between transmitting infectious diseases and passing faulty genes on to donor-conceived children. The paper also provides an in-depth analysis of the conflicting interests of the parties generated by such an obligation and proposes a model for embedding this ethical duty in a (legal) contractual framework.

How to kill gamete donation: retrospective legislation and donor anonymity.

Victoria (Australia) is considering retrospective legislation on the abolition of gamete donor anonymity. Retrospective legislation evokes many negative emotions mainly because it is considered unfair. It also makes it impossible for citizens to organize their life with reasonable certainty of the consequences. Introduction of this law for donor anonymity is defended by the right of the child to know its genetic origins. Against this law, people appeal to the right to privacy and confidentiality of the donor. This paper analyses the arguments for and against a retrospective law on donor anonymity by looking at the conditions that should be respected when two principles (the donor's right to privacy and the child's right to genetic information) have to be balanced. It is concluded that the justification for introducing retrospective law is lacking: the conditions are not fulfilled. Moreover, retroactive laws in the context of gamete donation may jeopardize the whole practice by destroying the trust of candidate donors and recipients in the government.

Disclosure behaviour and intentions among 111 couples following treatment with oocytes or sperm from identity-release donors: follow-up at offspring age 1-4 years.

STUDY QUESTION: Do heterosexual parents of young children following oocyte donation (OD) and sperm donation (SD) tell or intend to tell their offspring about the way he/she was conceived? SUMMARY ANSWER: Following successful treatment with oocytes or sperm from identity-release donors in Sweden, almost all heterosexual couples intend to tell their offspring about the way he/she was conceived and some start the information-sharing process very early. WHAT IS KNOWN AND WHAT THIS PAPER ADDS: Although the Swedish legislation on identity-release gamete donors has been in effect since 1985, there is a discrepancy between the behaviour of donor-insemination parents and the legal intention that offspring be informed about their genetic origin. The present study contributes data on a relatively large sample of oocyte and sperm recipient couples' intended compliance with the Swedish legislation. DESIGN AND DATA COLLECTION METHOD: The present study constitutes a follow-up assessment of heterosexual couples who had given birth to a child following treatment with donated oocytes. Data collection was performed during 2007-2011; participants individually completed a questionnaire when the child was between 1 and 4 years of age. PARTICIPANTS AND SETTING: The present study is part of the Swedish Study on Gamete Donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. For children conceived via OD, 107 individuals (including 52 couples and 3 individuals) agreed to participate (73% response). For children conceived via SD, the response rate was 70% (n = 122 individuals, including 59 couples and 4 individuals). Mean age of participants was 34 years (SD 4.4) and they reported a high level of education. MAIN RESULTS: The majority of participants (78%) planned to tell the child about the donation, 16% had already started the information-sharing process and 6% planned not to tell their child about the donation or were undecided. Many were unsure about a suitable time to start the disclosure process and desired more information about strategies and tools for information sharing. Agreement on disclosure to offspring within the couple was related to the quality of the partner relationship. BIAS AND GENERALIZABILITY: There is a risk of selection bias, with gamete recipients preferring secrecy and non-disclosure declining study participation. The results may be regarded as partly generalizable to heterosexual couples with young children following treatment with gametes from legislatively mandated identity-release donors in an established donor programme. STUDY FUNDING/COMPETING INTERESTS: Study funding by Merck Serono, The Swedish Research Council and The Family Planning Fund in Uppsala. No conflicts of interest to declare.

Donor conception, secrecy and the search for information.

Donor conception has historically been shrouded in secrecy. Such secrecy has been underpinned by social views and legal issues concemrning the adults involved in the process--the donor, the recipient parent(s), and, at times, the doctor. However, there is increasing recognition of the need to focus upon donor-conceived people's interests and rights to have identifying and non-identifying information about their donors. This editorial examines issues raised in relation to information release, while also introducing some of the arguments presented by other authors in this Special Issue of the JLM. It also considers recent Australian federal and State government inquiries that have favoured information release and the former Victorian Infertility Treatment Authority's service model to support people in the process of information access and release. While there has been a clear shift to favouring openness and honesty, legislative action is still required to ensure the balancing and realisation of people's interests.

Sperm donor limits that control for the 'relative' risk associated with the use of open-identity donors.

The majority of countries that support the use of donor insemination (DI) in artificial reproductive technology (ART) limit the number of children born from one donor. The setting of these donor limits, though intended to control for the risk of inadvertent half-sibling unions between the offspring of anonymous donors, actually have no evidence base. Controlling for the risk of inadvertent half-sibling unions may soon become unnecessary due to the increasing world-wide use of open-identity sperm donors and the revocation of donor anonymity in many countries. With the shift from anonymous to open-identity donation, the central issue is not the risk of genetic abnormality from inadvertent half-sibling consanguinity; it is the psycho-social impact of the multiple use of open-identity sperm donors. Despite this, the jurisdictions that allow or mandate the use of open-identity donors continue to observe existing limits that do not consider nor specifically control for the psycho-social impact of the multiple use of open-identity sperm donors. It is proposed that: (i) conservative interim donor limits be placed on the multiple use of open-identity donors, while research into the psycho-social impact of disclosure is undertaken to inform the establishment of evidence-based limits; and (ii) the existing limits in jurisdictions where anonymity is still commonly practiced or protected could be raised, if an updated mathematical model was used for calculating evidence-based anonymous donor limits.

Third-party reproductive assistance around the Mediterranean: comparing Sunni Egypt, Catholic Italy and multisectarian Lebanon.

The article examines religious and legal restrictions on third-party reproductive assistance in three Mediterranean countries: Sunni Egypt, Catholic Italy and multisectarian Lebanon. In Egypt, assisted reproduction treatments are permitted, but third parties are banned, as in the rest of the Sunni Islamic world. Italy became similar to Egypt with a 2004 law ending third-party reproductive assistance. In multisectarian Lebanon, however, the Sunni/Catholic ban on third-party reproductive assistance has been lifted, because of Shia rulings emanating from Iran. Today, third-party reproductive assistance is provided in Lebanon to both Muslims and Christians, unlike in neighbouring Egypt and Italy. Such comparisons point to the need for understanding the complex interactions between law, religion, local moralities and reproductive practices for global bioethics.

Maps of beauty and disease: thoughts on genetics, confidentiality, and biological family.

The author explores the ethics of decision-making and confidentiality in donor insemination through the narrative of her experience having two children with a sperm donor who was later discovered to carry a gene for a serious heart disease, hypertrophic cardiomyopathy. Contrasting individualist and communitarian ethical models, she questions understandings of confidentiality that hamper the construction of a medical family tree, especially when prognosis and treatment depend on the larger familial profile of the disease. She also emphasises that for the patient family the discovery of biological family through the lens of transmitted illness leads to a shift in family identity that goes beyond the purely medical.

[Evaluation of the Artificial Insemination Donor Data Act; data registration not yet in order]. / Evaluatie Wet donorgegevens kunstmatige bevruchting.

The Artificial Insemination Donor Data Act was first evaluated in 2012, and a second time in 2018. The aim of the most recent evaluation was to gain insight into the effectiveness and side effects of the law. The researchers did not only conduct a judicial analysis of the legislation and parliamentary history; they also visited fertility clinics, they undertook research at SDKB (Foundation for Artificial Insemination Donor Data), and interviewed stakeholders and key people involved in the process. From this, 17 recommendations were made, addressed to the Ministry of Health, Welfare and Sport, SDKB, fertility clinics and the Health and Youth Care Inspectorate. Some of these recommendations also affect the actions of fertility physicians and gynaecologists working in clinics and hospitals that perform donor treatments.

Parental information sharing with donor insemination conceived offspring: a follow-up study.

BACKGROUND: Studies of parental decision making regarding information sharing with offspring conceived as a result of donor insemination are almost all based on a 'one point in time' design. This study reports on parental decision making at two points in time, Time 1 and Time 2, 14 years apart. METHODS: Forty-four of 57 families (77%) who had agreed to take part in a follow-up study were interviewed. An in-depth semi-structured interview format was used. In addition, two questionnaires seeking mainly quantitative data were administered. RESULTS: Fifteen families (35%) had told their offspring of the donor insemination conception at Time 2 (2004). An additional seven families said they had always wanted or intended to tell the children and asked for assistance on how to do this. Where partners were in agreement on information sharing at Time 1 (1990)-either to tell or not to tell-this position was maintained. Where there was disagreement, or uncertainty, two-thirds had not told and one-third had. CONCLUSIONS: Despite the professional and socio-political culture at the time of treatment, almost half of the families in this study ended up sharing the donor insemination conception with their offspring. The results support the need for appropriate preparation for donor insemination family building.

Debate in embryo donation: embryo donation or both-gamete donation?

So far, more than 2 million babies have been born worldwide through assisted reproduction technologies. For many couples, there is no treatment except by involving a third party. Recently, embryo donation law has been approved by Iran's parliament and now it is legal in Iran. But there is a misunderstanding regarding the source of embryos: they can be obtained from surplus frozen embryos of infertile couples or embryos can be made from donated spermatozoa and eggs from fertile married couples. Here in this paper we discuss ethical, religious and legal aspects of these two procedures and present the advantages and disadvantages of them. Meanwhile, the new term 'both-gamete donation' was defined for the procedure that is practised here instead of 'embryo donation'. In conclusion we can say: (i) Iranian law means only embryo donation and covers only surplus embryos from other infertile couples and not both-gamete donation; (ii) as gamete donation is practised in Iran upon decrees of clergy leaders, we have no law or legislation against both-gamete donation; (iii) there are many ethical, legal and religious questions about both-gamete donation to be answered; (iv) ethical and religious questions are fewer concerning embryo donation compared with both-gamete donation; and (v) embryo sharing is a good way for donation of fresh embryos.

German guidelines for psychosocial counselling in the area of gamete donation.

Building a family using donated gametes (semen, oocytes or embryos) is associated with specific issues which differ from building a family with gametes from both intended parents, the resulting family comprising separated biological and social parenthood. To respect the welfare of all parties involved, the 'Beratungsnetzwerk Kinderwunsch Deutschland e.V.' (Infertility Counselling Network Germany) has developed guidelines for psychosocial counselling in this area. The following article summarizes international developments and introduces the German guidelines.