Co-designing genomics research with a large group of donor-conceived siblings.

Background: Human genomics research is growing rapidly. More effective methods are required for co-design and involving people, especially those sub-populations which are inherently high interest to medical research and thus at greater risk of being exploited. This case study documents how we worked with a large group of donor-conceived siblings who share the same sperm donor father, to explore how they might want to engage with and influence any future genomic research.

Counselling challenges associated with donor conception and surrogacy treatments - time for debate.

Fertility counselling services have had to respond to significant developments in fertility treatments in recent years, prompting increasingly complex personal and professional ethical challenges. This Commentary focuses on those rising from donor conception and/or surrogacy. The profile of those seeking such treatments has changed to include growing numbers of same sex couples, single people, people who are transitioning or have done, people seeking posthumous use of gametes, and people using cross-border services.

Survey of fertility counselling provision in UK licensed treatment centres during the first phase of the COVID-19 pandemic.

A survey of UK fertility counsellors' experiences of the impact on their service, including its availability, during the first phase of the COVID-19 pandemic in the spring of 2020 received 64 responses. Fifty three respondents had continued to provide a service. Forty now worked from a wholly/substantially different location to normal but many clinics provided no practical support for this ( = 17), or remote access to relevant clinic ( = 17) or client information ( = 12) and twenty five respondents reported reduced multi-disciplinary involvement.

Secrets and disclosure in donor conception.

This article considers the disclosure, sharing and exchange of information on being donor conceived within families, drawing on data from a study undertaken with donor-conceived adults registered with UK Donor Link (a voluntary DNA-linking register). This paper considers the narratives of how respondents found out they were donor-conceived and what events triggered disclosure of this information. This paper then goes on to examine the role secrecy played in their family life and uses the concept of 'display' to explore how secrecy affected their relationships with their immediate and extended family.

Direct-to-consumer DNA testing: the fallout for individuals and their families unexpectedly learning of their donor conception origins.

Increasing numbers of donor-conceived individuals (and/or parents) are seeking individuals genetically related through donor conception. One route is through 'direct-to-consumer' (DTC) DNA testing, prompting calls for fertility services to alert donors and prospective parents to the increasing unsustainability of anonymity and secrecy. The complexity of interpreting DNA results in this context has also been discussed, including their lack of absolute certainty, as has the need for professional and peer support.

Gamete donors' reasons for, and expectations and experiences of, registration with a voluntary donor linking register.

This paper reports on a study of the views and experiences of 21 sperm donors and five egg donors registered with UK DonorLink (UKDL), a voluntary DNA-based contact register established to facilitate contact between adults who wish to identify and locate others to whom they are genetically related following donor conception. Specifically, the paper examines donors' reasons for searching for, or making information about themselves available to donor-conceived offspring. Their expectations of registration with UKDL, experiences of being registered and finally, the experiences of those who had contacted donor-conceived offspring and other genetic relatives are investigated.

Can the UK's birth registration system better serve the interests of those born following collaborative assisted reproduction?

Current birth registration systems fail to serve adequately the interests of those born as a result of gamete and embryo donation and surrogacy. In the UK, changes to the birth registration system have been piecemeal, reactive and situation-specific and no information is recorded about gamete donors. Birth registration has thereby become a statement of legal parentage and citizenship only, without debate as to whether it should serve any wider functions.

Emerging models for facilitating contact between people genetically related through donor conception: a preliminary analysis and discussion.

Previous research indicates interest among some donor-conceived people, donors and recipient parents in having contact. Outcomes of such contact appear largely, but not universally, positive. This paper seeks to understand better the characteristics of associated support services.

A survey of UK fertility clinics' approach to surrogacy arrangements.

This paper draws on the findings of the first survey of surrogacy arrangements in Human Fertilisation and Embryology Authority (HFEA) licensed fertility clinics since 1998. Given the complex social, ethical and legal issues involved, surrogacy continues to raise debate worldwide and fuel calls for increased domestic provision in developed countries. However, little is known about how recent changes have affected HFEA licensed clinics.

Evolving minimum standards in responsible international sperm donor offspring quota.

An international working group was established with the aim of making recommendations on the number of offspring for a sperm donor that should be allowable in cases of international use of his sperm. Considerations from genetic, psychosocial, operational and ethical points of view were debated. For these considerations, it was assumed that current developments in genetic testing and Internet possibilities mean that, now, all donors are potentially identifiable by their offspring, so no distinction was made between anonymous and non-anonymous donation.

It 'did what it said on the tin' - participant's views of the content and process of donor conception parenthood preparation workshops.

Using donor conception treatment for family building brings challenges as well as rewards. As social model approaches to managing genetic difference within families gradually replace earlier medical models, parents are encouraged to be open with their children about their origins amidst greater social acceptance. Little is known about effective interventions to help prospective parents prepare for such family life.

Family building using donated gametes and embryos in the UK: recommendations for policy and practice on behalf of the British Infertility Counselling Association and the British Fertility Society in collaboration with the Association of Clinical Embryologists and the Royal College of Nurses Fertility Nurses Forum.

The UK Department of Health's consultation on the future of the Human Fertilisation and Embryology Authority (HFEA) presented an opportunity to review current practice in relation to donor conception (DC) and make recommendations for improving services to those seeking fertility treatment, to families with donor conceived children and those of donors, and to those seeking later information. The year 2023 marks the start of post-2005 donor conceived adults having statutory access to identifying information about their donor(s); some adults with pre-2005 donors will have access sooner if the donor(s) re-registers as 'willing to be identified'. This paper examines current practice in UK licensed treatment centres in collecting and disseminating donor information and in supporting donors and prospective parents.

Male coping with cancer-fertility issues: putting the 'social' into biopsychosocial approaches.

Biopsychosocial approaches in infertility and cancer services and research pay limited attention to 'social dimensions'. Additionally, existing cancer-related male infertility research is dominated by sperm banking studies even though fertility-related social concerns in the long term are reported to have an adverse effect on wellbeing. This paper considers whether social influences affected the fertility-related experiences of 28 men interviewed as part of a mixed-gender qualitative study of 'South Asian' and 'White' cancer survivors and their professional carers.

Psychosocial oncofertility issues faced by adolescents and young adults over their lifetime: a review of the research.

This review considers psychosocial oncofertility research relevant to adolescents and young adults over their lifetime. There is growing awareness of the fertility preservation needs of younger males including lowering practical barriers and attending to emotional impact. Despite decisional challenges facing females--the experimental nature of procedures, time involved and potential involvement of partners/donors (for embryo cryopreservation)--findings suggest they too benefit from fertility information at diagnosis and access to fertility specialists.

Working with previously anonymous gamete donors and donor-conceived adults: recent practice experiences of running the DNA-based voluntary information exchange and contact register, UK DonorLink.

This article describes recent practice experiences with donor conceived adults, donors, non-donor-conceived adult children of donors using the voluntary DNA-based register, UK DonorLink. It highlights additional complexities faced when using DNA rather than paper records for searching, in particular from the risk of false positives, low chances of success and potential inclusion of biological parents' DNA. Professionals' experiences in supporting those being "linked" suggest challenges as well as rewards.

Donor-conceived people's views and experiences of their genetic origins: a critical analysis of the research evidence.

This article reports on a systematic review of English language, peer-reviewed publications from 13 empirical studies with donor-conceived children and adults regarding their experiences and perceptions of donor conception. A total of 19 articles that met the inclusion criteria were reviewed. These were identified by means of a bibliographic search of four electronic databases for the period 1990-2011 and supplemented by the authors' personal knowledge of work in this field.

Producing sperm, egg and embryo donors' pen portraits and other personal information for later use by donor offspring: an exploratory study of professional practices.

This study considered professional input into collecting personalized donor information for later release to donor offspring. Existing studies report the importance of such information for identity completion, to satisfy curiosity, and to allay anxiety about genetic inheritance. The study used a three-pronged approach: a literature search of professional practices in this and related fields; key informant telephone interviews with donor-conceived adults, sperm and egg donors, and professionals and a postal survey of UK clinics' practices and views.

Completing the surrogate motherhood process: parental order reporters' attitudes towards surrogacy arrangements, role ambiguity and role conflict.

This study investigated the attitudes of parental order reporters (PORs) towards their work with surrogacy arrangements and their experiences of role conflict and role ambiguity. A questionnaire was used to assess PORs' perceptions of their role in parental order [PO] applications, attitudes towards surrogacy arrangements and the legal process and the influence of role ambiguity or conflict. Questionnaires were distributed to all PORs employed by the Children and Family Court Advisory and Support Service in England.

Young males' experiences of sperm banking following a cancer diagnosis - a qualitative study.

Existing research into sperm banking by young males following a cancer diagnosis is predominantly quantitative; little is known about personal experiences, psychosocial and attitudinal barriers to it amongst patients and/or professionals, or the later impact of potential or actual subfertility when banking has or has not taken place. This qualitative study used single in-depth interviews with 16 males aged 13 to 20 at diagnosis (16 to 30 years at interview) to report retrospectively on their experiences, concerns and satisfactions. There was support for sperm banking, including among those who declined to bank or failed to do so successfully.

Practice experiences of running UK DonorLink, a voluntary information exchange register for adults related through donor conception.

Previous practices of withholding information from those conceived through donor conception are changing. However, little is known about the service needs of those affected. In response to this, the UK Government-funded pilot voluntary information exchange and contact register, UK DonorLink, was launched in 2004, covering conceptions prior to August 1991.

Prospective parents' intentions regarding disclosure following the removal of donor anonymity.

This short survey of UK infertility counsellors was designed to determine whether the removal of donor anonymity resulted in noticeable changes in prospective parents' stated intentions regarding disclosure of their origins to any children conceived through donor conception. Members of the British Infertility Counselling Association working in Human Fertilisation and Embryology Authority (HFEA) -- licensed centres, before and after the legal changes, were sent a short questionnaire that included space for free comments (take-up: 62%). Three-quarters reported changes.

Ethical objections to sex selection for non-medical reasons.

This paper examines the main ethical argument used to support the use of sex selection for non-medical reasons, namely that sex selection for non-medical reasons should be allowed on the grounds of reproductive autonomy. A critique of this argument is offered, concluding that sex selection for non-medical reasons should not be permitted.

The use of pornographic materials by adolescent male cancer patients when banking sperm in the UK: legal and ethical dilemmas.

Increased awareness of the importance of fertility concerns to teenage cancer survivors is leading to growing numbers of male teenagers being offered sperm banking at the time of diagnosis. This is now extending to males diagnosed with other conditions where gonadotoxic agents are used in treatment. The storage of sperm in these circumstances is a challenging aspect of health care, given the complex issues and timescale involved.