INTRODUCTION

Medically assisted reproduction has helped many people to fulfil their desire to have children. Nearly 11 million fertility treatments, which have led to the birth of almost three million children, took place in Europe between 1997 and 2018. The figures show an upward trend: from around 35,000 children born in 1997 to over 200,000 children born in 2018.

Medically assisted reproduction can involve the use of gametes (sperm and/or eggs) or embryos from a donor. Although many parents prefer having a genetically related child, the use of donor gametes or embryos is sometimes the only option. Heterosexual couples with fertility or safety problems (e.g. at high risk of transmitting genetic disorders) and same-sex couples or single women with a desire to have children have to turn to donor gametes or embryos. This chapter deals with the question of preserving or abolishing donor anonymity in the field of gamete and embryo donation. To this day, donor anonymity versus access to information about the donor has been a key issue in the debates on medically assisted reproduction.

The next section of this chapter focuses on recent developments that have taken place in the complex field of medically assisted reproduction and the right to know one's genetic origins. The rights of donor-conceived persons to know about their origins have changed for the better in the past 30 years. Traditionally, most jurisdictions favoured anonymous donation. These days, the principle of the absolute anonymity of the donor is called into question both at international and national level.

INTRODUCTION

Use of donor sperm has been a form of family building for perhaps more than a century in a clinical context; the use of donated oocytes, however, did not become feasible until the 1980s. Counselling intended parents who consider use of donor gametes is still a relatively new field and has since the start been influenced by public attitudes towards the importance of genetics and kinship in parentage, moral and community standards and legal frameworks. One of the issues influenced by these attitudes is the disclosure of donor conception and identity to donor conceived children.

For decades, it was not an option to disclose donor conception to children so conceived and to the outside world. Nowadays, under the influence of donor conceived offspring themselves and scientific evidence, promotion of greater openness of donor conception is supported by new policy frameworks in a number of countries. Evidence shows that openness is the better approach for parents and offspring and the only realistic approach, given the growing curiosity towards ancestry information and the increased use of direct-to-consumer genetic testing. However, even today donor conception is veiled in secrecy for many heterosexual families and even homosexual families or single mothers do not always talk to their offspring about their conception with donated gametes. Nevertheless, fertility centres who offer treatment with donor gametes have a responsibility to offer evidence-based counselling on the use of donor gametes including information provision, assessment of readiness to use donor gametes, guidance of patients on decision-making on (non-) disclosure of donor conception and psycho-education on the lifelong management of this topic.

INTRODUCTION

Insemination with donor sperm is ‘the oldest technique in the new technologies of reproduction’. It was first successfully practised in 1884. Since WWII the number of donor insemination treatments has slowly increased. At its onset donor insemination was met with hostility and not socially accepted. As a result, non-disclosure and donor anonymity were the primary organising principles of the practice and it remained hidden from public view. Linked with these principles were particular representations regarding those involved that co-constructed the practice of donor insemination. For example, donor-conceived people were represented as purely the end-product of a donor insemination treatment, a successful outcome of a medical procedure. Policy-makers and practitioners talked about the donor-conceived children and it was decided for them that it was in their best interest not to know about their donor-conceived status. During the 1970s and the years following, laws were passed in some jurisdictions to ensure legal certainty regarding the status of the donor-conceived child. And in the ‘80s – after the birth of Louise Brown, the first IVF baby – discussions were raised about if and how assisted reproductive technologies should be regulated. These debates included whether or not donor-conceived people should have access to donor information. Meanwhile, donor-conceived children had grown into adults and gained a voice of their own, expressing their needs and interests. And societal views on the role of genes in identity development, the meaning of genes in relationships, and the importance for donor-conceived people of gaining access to genetic and biographical data were re-evaluated.

INTRODUCTION

A right to identity for individuals is protected within the European human rights framework on the basis of Article 8 of the European Convention on Human Rights (ECHR). But what does the right to identity amount to? Is it a right for individuals to be themselves and to protect all that is important to their identity, which possibly demands respect for ‘who a person is and to whom or what someone belongs’? Does the right require recognition of an individual’s existence: a right to be recognised as a person (before the law), which demands respect for the fact ‘that someone exists’? Or does the right to identity come down to ‘the right to know one’s biological/genetic origin’, since the right to identity not infrequently comes up in discussions on parentage in the context of adoption, anonymous birth, surrogacy etc. This chapter on the right to identity aims to answer such questions on the basis and meaning of this right as it is given in the case law of the European Court on Human Rights (ECtHR, or the Court). If the right to identity arises in the context of Article 8 ECHR, what are we talking about then? In this chapter it will become clear that: 1) a right to identity is not one and the same as a right to know your origin, and 2) the right to identity in the ECHR does not per se contain the same as rights to identity in other instruments.

INTRODUCTION

On 29 May 2019, the Dutch Minister of Health Care presented the results of the second review of the (Dutch) Act on Donor Data in Artificial Insemination (Wet donorgegevens kunstmatige bevruchting – WDKB) to the Dutch Parliament. This review, performed by a multidisciplinary research team of the Universities of Groningen and Amsterdam, aimed at obtaining a clear view on the WDKB's efficiency, side effects and general application. Apart from several positive developments, the evaluation regrettably showed various shortcomings in the registration and provision of donor information, the guidance given to donor-conceived children, donors and intended parents after such information was shared, as well as deficiencies in specific education, for instance on the proper time to inform a child about its parental origin. Furthermore, the performance of the Foundation on Donor Information relating to Artificial Insemination (the Foundation), responsible for the adequate implementation of the WDKB, gave rise to serious concerns about achieving the Act's objectives, especially with regard to safeguarding the (donor) child's right to information about its biological descent.

In contrast to the first evaluation of the WDKB in 2012, the WDKB's second review examined separately to what extent current WDKB-practice could be considered ‘children's rights-proof ‘. A realistic view on this was believed to be imperative, because the working of the WDKB would be tested when the first donor-conceived children, born under the WDKB and reaching age 16, would start (as of Spring 2021) to request donor-identifying information from the Foundation.

INTRODUCTION

The right to genetic ancestry and the right to identity as discussed in the previous chapters are closely linked to the concept of ‘genes’. Biologically speaking, a gene is a basic unit of heredity, made up of DNA. Every human being starts out with genetic material from a sperm and an egg cell. Not only are genes essential, basic elements of an individual, but the sharing of genes also creates genetic connections between people.

Despite the precise biological definition of what genes are, genes are not just a biological given: they are also a social construct. Over the years, the significance and meaning given to genes and genetic relations have been extensively reviewed in philosophical, psychological, educational, sociological, and legal discourses as well as by lay people. In particular, the significance of genes to the development of identity (in the nature-nurture debate) and in kinship has often been discussed. Sometimes more significance was given to nature, and at other times to nurture.

The last few decades have seen an increased interest in genes within various fields. In the medical world, interest was raised by the Human Genome Project (HGP), an international, collaborative research programme whose goal was the complete mapping and understanding of all the genes of human beings. This ‘new genetics’ has led to an enhanced emphasis on the importance of genes in the field of health, focusing on genetic predisposition and inheritance.

Do donor-conceived children have a right to know the identity of their sperm or egg donor or should donors have a choice to remain anonymous? What does relinquishing donor anonymity mean for establishing parentage? Should laws regulating access to donor information have retroactive effect? What are the experiences of children conceived with donor sperm? And how can we prepare prospective parents for raising a donor-conceived child? How can we facilitate contact between children and their donor? These are some of the questions that are discussed in the chapters of this book, which is the result of a multidisciplinary seminar about to the right to identity and access to information about genetic origins and parentage organised by RETHINKIN_.

The book starts with a chapter that places the topic in a broader perspective. In this chapter Bou-Sfia explores the right to identity from an international human rights perspective. On the basis of extensive research on this topic, Bou-Sfia states in the Introduction that ‘a right to identity is not one and the same as a right to know your origins’ and ‘the right to identity in the European Convention on Human Rights (ECHR) does not per se contain the same as rights to identity in other instruments’. The chapter examines case law of the European Court of Human Rights (ECtHR) in which the Court specifically refers to identity in the context of Article 8 ECHR. This provides insight into the scope of the right to identity and the concept of identity within the context of Article 8 ECHR.

INTRODUCTION

Society evolves due to scientific advances in assisted reproductive techniques (ART), allowing couples and single parents to form their families.Nowadays, children can have more people playing different roles in their lives besides their biological parents. For instance, parents can raise children conceived through surrogacy or gamete donation to whom they have no genetic link, or polyamorous parents can choose to raise children with two or more other people.3 The modern family has different elements (emotional, functional, social) that may complement and conflict with each other.While reproductive medicine and gamete donation help couples have offspring when they cannot conceive naturally, in legal terms, it raises the question of whether these children have the right to know their genetic origins.4 5 Both Articles 7 and 8 of the United Nations Convention on the Rights of the Child (CRC)6 and the case law on Article 8 of the European Convention on Human Rights (ECHR)7 recognise this right.This new reality invites legislators worldwide to rethink traditional legal 8 concepts such as legal parentage and parental responsibilities.

During this process of rethinking, legislators face the same challenges: for instance, how to deal with questions of genetic origin, and how does this relate to protecting family life and parental responsibilities? And how to deal with (conflicting) rights of the child, the gamete donor and non-biological parents?

The approach to the issue of conflicting rights varies in the different legal systems, depending on how a legal system balances all the rights and interests at stake in their legislation.

The ‘Judgments Project’ was a process of multilateral discussions and negotiations between the members of the Hague Conference on Private International Law between 1992 and 2001. Its aim was to create unified legal provisions regulating the exercise of international direct jurisdiction and ensuring the recognition and enforcement of judgments in civil and commercial matters. This project was a remarkable and important project for various reasons. By creating a global regime enabling the recognition and enforcement of judgments in civil and commercial matters across borders between the Hague Conference members (including, among others, the United States of America and the Member States of the European Community) and third States, it would have filled a massive gap in the international legal order at the time. In addition, the Hague Judgments Project was the first serious attempt by the Hague Conference since the 19th century to unify rules of international (direct) jurisdiction (sometimes simply referred to as ‘jurisdiction’), concerning the power of courts to hear civil and commercial proceedings with an international element and render a judgment against the defendant, on a large scale. This ambitious project to create a global convention on jurisdiction and judgments failed, however, after almost 10 years of preparatory work, and an enormous amount of resources on the part of both the Hague Conference Member States and the secretariat of the Hague Conference, the Permanent Bureau, had been spent.

INTRODUCTION

As discussed in Chapter 2, the Permanent Bureau deviated from its established practices by not preparing feasibility studies on each of the possible types of convention in order to create a convention on jurisdiction and judgments in the context of the Hague Judgments Project. A closer analysis of the preparatory work the Permanent Bureau undertook for successful past convention projects (the 1980 Hague Convention on International Child Abduction and the 1993 Hague Convention on Intercountry Adoption) shows that for the Hague Judgments Project, the Permanent Bureau also departed from past usage in other ways. When looking into the preparatory work on the 1980 Hague Child Abduction Convention and the 1993 Hague Intercountry Adoption Convention, a specific pattern of preparation can be identified. The Permanent Bureau not only prepared feasibility studies before a new topic was added to the agenda of the Hague Conference. Additionally, it conducted research on the needs or problems of the Hague Conference Member States, and on the possible solutions which could be employed by a new private international law instrument. Furthermore, the Permanent Bureau used to partake in detailed planning for a new Hague Convention once potential solutions of private international law for addressing the relevant problems or needs had been identified. This preliminary work on new Hague instruments, intentionally or unintentionally, followed established patterns used in the discipline of project management. Project management is a method originating from business and management studies which is used to plan, manage and control the different life cycles of a project in order to achieve the project objectives within a certain pre-defined time limit.

After the Special Commission meeting in 1996, the Hague Judgments Project was officially added to the agenda of the Hague Conference during its Eighteenth Session. In project management terms, and according to previous Hague Conference practice, the Hague Judgments Project now entered the ‘implementation phase’, i.e., the phase in which the drafting of a convention text began during further Special Commission meetings set up for this purpose. For this phase, which lasted from June 1997 – October 1999, in total five further Special Commission meetings took place: in June 1997, March 1998, November 1998, June 1999 and October 1999 (originally, only four Special Commission meetings were scheduled). The draft convention text created by those Special Commission meetings was meant to serve as the basis for official negotiations between the Hague Conference Member States during the Nineteenth Diplomatic Session, which originally was scheduled to take place in the year 2000.

In theory, during this ‘implementation phase’, the plan to develop a judgments convention should have been executed. To recall, the general concept that had been developed during the Special Commission meetings in 1994 and 1996 consisted of pursuing the creation of a strict double convention as a first priority (but without having abandoned the mixed convention concept completely). However, an important project management step in the creation of a plan for developing a global judgments convention had been missed. According to good project management practice and previous usages of the Permanent Bureau, the general concept for creating a Hague Judgments Convention that had been developed and incidentally approved by the Hague Conference Member States during the Eighteenth Session should have been developed further in a ‘definition phase’ of the project.

Another question which needs to be considered in order to understand why the Judgments Project failed is whether or not the project addressed any real interests or needs of the Hague Conference Member States in general, and of the two main stakeholders in the Judgments Project, the US and the EC Member States, in particular. As discussed above, creating a global double convention that would unify grounds of international direct jurisdiction and secure the recognition and enforcement of judgments in civil and commercial matters had a strong theoretical appeal. In particular, unified grounds of jurisdiction would have enhanced legal certainty and predictability in international civil and commercial proceedings as compared to the status quo, and the guaranteed recognition and enforcement of judgments would have fostered access to justice for litigants, and supported trade relations between States. However, if these theoretical interests had not matched any real national interests or needs of, in particular, the US and the EC Member States, the two key stakeholders in the project, this could have contributed to the fact that the Judgments Project did not lead to the adoption of a convention text.

UNITED STATES INTERESTS IN THE JUDGMENTS PROJECT IN 1992

SECURING THE RECOGNITION AND ENFORCEMENT OF UNITED STATES JUDGMENTS IN THE EUROPEAN COMMUNITY

It was the US who proposed to put negotiations on a general convention on the recognition and enforcement of foreign judgments in civil and commercial matters on the agenda of the Hague Conference in 1992.

LESSONS FROM THE FAILURE OF THE JUDGMENTS PROJECT (1992–2001)

The original Judgments Project of the Hague Conference, which had consumed almost 10 years of work on the part of the Hague Conference Member States and the Permanent Bureau, was a missed opportunity to create an international convention regulating both the recognition and enforcement of foreign judgments and international direct jurisdiction. This was not due to the unsuitability of the Hague Conference as a forum for creating a global judgments convention. The Hague Conference was an entirely suitable forum due to its unique experience in and proven track record of concluding successful conventions which harmonised rules of private international law. Moreover, the Project did not fail because unifying grounds of jurisdiction on a broad scale and on a global level was impossible. Rather, the Judgments Project did not lead to the adoption of a convention text by the Hague Conference Member States because the pre-negotiation phase of the project (between 1992 and 1999) had not been prepared and managed by the Permanent Bureau with the same rigour as other Hague Conference projects.

If the Permanent Bureau had more closely adhered to well-established management practices and procedures employed for other Hague Conventions, the Special Commission meetings would not have pursued the goal of working towards an unfeasible convention type in the form of a closed double convention as a first priority.

After the final Special Commission meeting had taken place in October 1999, the US declared that it could not support the October 1999 Preliminary Draft Convention as a basis for multilateral negotiations in a Diplomatic Session, and the Judgments Project had reached an impasse. The Legal Advisor to the US Department of State, Jeffrey D Kovar, informed the then Secretary General of the Hague Conference, Hans van Loon, in February 2000 that the October 1999 Preliminary Draft Convention which had been produced by the Special Commission meetings on the Judgments Project stood ‘no chance of being accepted in the United States’. According to this letter, the October 1999 Preliminary Draft Convention raised various issues regarding its scope of application, the rules on recognition and enforcement, Article 37 October 1999 Preliminary Draft Convention (Relationship with other conventions), and Article 41 October 1999 Preliminary Draft Convention (Federal clause). The letter also raised concerns regarding the specific content of some of the jurisdictional provisions of the green list. The most significant concerns of the US, however, related to the structure of the draft convention text, i.e., the convention type pursued, which was a mixed convention in name only as discussed above in Chapter 5: