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. This sits uneasily with the increasingly accepted human right to know one's genetic and gestational as well as legal parents, and the duty of the State to facilitate that right. This commentary sets out one possible model for reform to better ensure that those affected become aware of, and/or have access to, knowledge about their origins and that such information is stored and released effectively without compromising individual privacy. Among other features, our proposal links the birth registration system and the information stored in the Human Fertilization and Embryology Authority's Register of Information, although further work than we have been able to undertake here is necessary to ensure a better fit where cross-border treatment services or informal arrangements have been involved. The time for debate and reform is well overdue.

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. Many reported that, when successful, it eased any later fertility-related concerns by offering a possible alternative route to biological fatherhood. There was satisfaction with levels of understanding, recall and decision making, though lack of clarity about consent conditions. Sperm bank professionals were less likely than oncology staff to achieve good rapport. Improvements to consent arrangements, facilities, written information and sharing of results were suggested. Small numbers from minority ethnic or disabled communities meant that any uniqueness in their experiences could not be identified. While some improvements to the process of sperm banking and follow-up can be acted upon with minimal implications, others may be more complex.

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. UK law has been enacted to protect legal minors from the potentially harmful effects of exposure to pornographic materials, yet there is reason to suppose that their use in this context could have therapeutic benefit in aiding successful masturbation. This paper uses material gained through consultation with the eleven largest UK sperm banks and 94 male teenage cancer survivors, to discuss the associated legal and ethical dilemmas, including those around the role of parents/carers. Findings suggest that there is variable practice in sperm banks, that almost a quarter of teenage males wanted access to soft porn when banking sperm, and half wanted to bring in their own materials. It concludes that there is an urgent need for any legal barriers to the therapeutic use of pornographic materials to be understood and examined.

Past semen donors' views about the use of a voluntary contact register.

This paper reports on qualitative data from a UK Department of Health-funded telephone interview study of 32 men who donated sperm samples at King's College Hospital, London between 1988 and 2002. The study considers the donors' attitudes and views about a proposed voluntary information exchange and contact register. The results suggest that semen donors continue to manage thoughts and feelings that arise from donation throughout their lifetimes, linked to their philosophical beliefs and/or evolving personal and social experiences. Some donors supported the register proposal even if they anticipated that there might be a personal cost to themselves. Several saw contact with donor offspring and/or knowledge about the outcome of their donation as potentially satisfying, indicating that it is possible to retain an interest in those to whom one is genetically related regardless of social contact. There was strong support among donors to have: (i) some control over information release and contact and (ii) access to ongoing information, advice or support from professionals who are skilled and experienced in search and reunion services. Some donors would be willing to be approached for information or contact even if they did not register. The findings indicate important policy and practice messages about the ongoing needs of donors.