In Japan, research on issues of donor conception has been accumulating for several decades, and the need for legislation concerning donor conception is now recognized. Since the early 2000s, donor-conceived individuals have begun to speak out for the right to know their biological origin, and the general public has come to understand the importance of this right. However, until recently, no relevant law or legal regulation existed in Japan. This chapter (1) introduces the historical and cultural background of sperm donor anonymity in Japan; (2) reviews the positions of various government committees since the late 1990s; (3) provides an overview of how donor offspring, parents, and intended parents of donor-conceived children have dealt with the issues; and (4) discusses the reasons for the slow pace of legislation and the Japanese government’s failure to recognize the right of donor offspring to obtain donor information.

Growing numbers of men, trans/masculine, and non-binary people are bearing children, some of whom utilise known donor sperm to conceive. How this diverse population understands the role of known donors has, to date, received little attention. This chapter focuses on nine individuals who used known donor sperm to conceive, drawn from a larger international study of 51 men, trans/masculine, or non-binary people who were gestational parents. The participants discuss the role of donors in their children’s lives, exploring topics such as identifying potential donors, the incorporation (or not) of donors into existing kinship narratives, and the need to create opportunities for children to negotiate their own relationships with donors in the future. The findings highlight the potentially unique social scripting needs of men, trans/masculine, and non-binary people who conceive using donor sperm. The chapter concludes by providing suggestions for how this diverse group of people may be assisted in developing these unique social scripts.

Until recently, parents of donor-conceived children were told by doctors to keep their child’s conception story a secret. Over the past 20 years, however, attitudes towards openness have begun to shift. Australian law now supports identity disclosure when the child turns 18. However, only one state permits “early contact” between donors and their donor offspring. In the absence of legislative mechanisms for achieving early contact, some parents have taken donor linking into their own hands, using a variety of “do-it-yourself” techniques to identify donor relatives. Through interviews with Australian parents, this chapter explores motivations for, and the methods used by, parents to make early contact with their child’s donor relatives. It reflects on how the availability of new technologies has resulted in a relocation of power from fertility clinics to consumers, providing parents and their children with access to information to which they are not (yet) legally entitled.

Direct-to-consumer (DTC) DNA testing has had a major impact on people affected by donor conception, including donor-conceived people, their parents, and donors. It has enabled people to discover their conception status and to identify the donor. Donors who were assured of anonymity and their extended families are being contacted by their donor offspring and recipient parents. Consequently, it is now impossible to assure donors they will be anonymous, and parents can no longer consider that nondisclosure of donor treatment to their children is a viable option. Fertility counselors need to prepare their clients for the implications of DTC DNA testing, be fully informed of the repercussions faced by donor-conceived adults, especially those finding out their conception status past childhood, and also to have donor-linking skills as part of their counseling tool kit.

For many years, donor conception treatment was seen as a “solution” to involuntary childlessness, marked by pregnancy. Through awareness-raising by mental health professionals and especially donor-conceived people themselves, it is now increasingly recognized as the start of a family-building process with an ongoing story that unfolds over the family life-span and beyond. This chapter shows how parents’ abilities to adjust their prior beliefs about the meaning of “family” and “genetic relationships” become critical in the shift from “building a family” to “being a family” and onwards. Moreover, they are not alone anymore: various story-tellers in the new family system, including children, grandparents and others, each have their own unfolding understandings to voice and manage, separately and together. Throughout this creative and challenging process, the donor(s) has a presence, regardless of whether all are aware of their involvement. The complexity of disclosure is considered alongside the need for openness itself to be ongoing and interactive if it is to healthily accommodate shifts in understanding and power balances as children grow. Families do not exist in a vacuum, so wider networks and societal developments can also influence the permeability of their boundaries. Finally, the role of professional and peer support is considered.

Embryo donation is a unique and novel disposition option and family-building choice for patients. While there are an estimated one million surplus embryos cryopreserved around the world, embryo donation cases remain low. At the same time, interest in embryo donation is on the rise, as an increasing number of patients consider alternative methods of family creation. The heightened interest in embryo donation necessitates skilled fertility counselors to provide education and counseling to patients on both the donor and recipient side. Potential embryo donors often struggle with decision making around the disposition of their remaining embryos, while potential recipients may grapple with the notion of nongenetic parenting and their relationship to their donors and their donor-conceived children. The fertility counselor can play an integral role in helping patients navigate their decision making and their new relationships and family structure. This chapter explores the historical, logistical, psychosocial and relational considerations of embryo donation. The chapter highlights the important role of the fertility counselor throughout an embryo donation journey, and offers frameworks, best practices, and therapeutic tools that counselors can utilize as they work to support their patients.

This concluding chapter takes stock of the ways in which the bioinformation governance landscape would look different if it were to embrace the picture of narrative identity impacts, interests, and responsibilities characterised and defended in this book. It proposes that information subjects’ identity-related interests in whether and how they encounter information about their bodies, biology, and health should be firmly installed amongst and routinely weighed alongside the other ethical concerns – such as protecting health, privacy, confidentiality, and autonomy. This does not mean that identity interests should invariably prevail over other ethical, practical, or legal considerations but that they should be afforded weight commensurate with the centrality of an inhabitable, embodied self-narrative to a full, flourishing, and practically engaged life. Mindful of what has been said about the ways in which identity impacts vary between information types and individual circumstances and thus the need for responsive rather than rigid disclosure policies and practices, this chapter proposes priorities for reform in five contexts in which ethical and legal debates about information access are currently pressing. These contexts are donor conception, including mitochondrial donation; return of individual research findings to participants; navigating confidentiality and consent in healthcare; direct-to-consumer genomics; and personal health-tracking devices.

This chapter explores the preceding theory-based propositions, concerning the narrative roles of personal bioinformation, in light of people’s attitudes to and experiences of encountering three categories of bioinformation about themselves, as reported by empirical studies. These three categories are: information revealing conception using donor gametes, results from genetic tests indicating disease susceptibility, and findings from mental health applications of neuroimaging. These findings help illustrate the theory-based claims presented in Chapter 4 while also sense-testing and refining these claims with the benefit of insights into information subjects’ lived experiences. This chapter first outlines a sample of relevant findings, casting the net wider than those that explicitly frame subjects’ experiences in terms of identity. It then analyses these findings through the lens of embodied and relational narrative self-constitution, highlighting the range of positive and detrimental impacts that bioinformation can have on recipients’ identity narratives. These impacts include playing enabling, explanatory, practical, revisionary, and restrictive roles. The chapter concludes by identifying common and divergent themes across the three examples. This equips us better to understand diversity amongst recipients’ reactions to different information and also to extrapolate beyond specific observations relating to the three illustrative examples.

The right to know one’s genetic origins should not be recognised as a moral right because it protects no important interest. The knowledge of one’s genetic origin is neither sufficient nor necessary for the construction of one’s identity. The suffering of some donor-conceived people is based on the misconception that this knowledge is necessary. The empirical evidence generated by psychological research on donor-conceived families has shown convincingly that not knowing that one is donor conceived and knowing about one’s donor conception but not knowing one’s donor does not lead to significant differences in psychological well-being and family functioning. A new argument by some people who favour donor identifiability is that donor anonymity can no longer be guaranteed. Although correct, this fact has no implications for the normative claim about the right to know. If anonymity was agreed between donor and recipients, this agreement should be respected even when, or especially when, it can be broken.

Chapter 5 addresses the regulation of donor conception. This chapter examines how parentage should be allocated in situations where this procedure is used. The aim of the chapter is to identify a means of allocating parentage that is most in keeping with the best interests principle. The child’s right to identity and safeguards required to vindicate this right in cases of donor conception are also considered, as is the issue of access to services for gay and lesbian couples.