Donor Information Consultation: Providing Information About Gamete or Embryo Donors

June 2002

Introduction

This is SPUC's response to Donor Information Consultation: Providing information about gamete or embryo donors, UK Department of Health, 20 December 2001.

Summary

Children born as a result of gamete or embryo donation must have access to identifying information about the donor. Access should not be conditional on the wishes of the parents or donors.

Introduction

What is artificial reproduction all about? It's about satisfying the desire of adults experiencing infertility to have a child. Infertility is nearly always heartbreaking for the couples involved; artificial reproductive technologies (ART) represent medicine's best attempts to bypass infertility and allow a couple to have their desire for a child fulfilled. So, the way that these technologies have evolved as a compassionate response to human infertility really puts the wants, needs, and desires of prospective parents first.

At the same time we know that it is wrong to create human beings with no regard for their well-being, both short term and long term. Although some of these techniques involve the deaths of many thousands of human embryos, the state does have a commitment to the welfare and best interest of the children who are eventually born through ART. Their rights and well-being must dominate this discussion.

In our view the rights of children born through ART must not be subordinated to the needs, wants and desires of parents or donors. The rights of the children must be a primary consideration. Moreover, the wants, needs, and desires of parents need to be carefully distinguished from the rights of parents given the modern penchant for too easily translating the wants, needs, and desires of adults into fundamental human rights.

For example, it is often claimed that human beings have a right to have a child, a right which is meant to carry with the obligation on the part of others (science, medicine, the state) to provide the means to satisfy that rights claim. In reality, the Universal Declaration on Human Rights recognises only the rights of "men and women of full age ... to marry and to found a family"1, while the International Covenant on Civil and Political Rights also states that "the right of men and women of marriageable age to marry and to found a family shall be recognised."²

If donations are no longer made anonymously, and children can access information about their biological origins, what will the effect be? Will people be less inclined to donate? Will the industry suffer? How will the legal parents feel when a child wants to meet his or her donor? How will the donors feel about their offspring? If the child has right to have knowledge of his or her biological origins, that is, a right to know fully his or her own personal identity, then these concerns must take second place to the child's right to know given that "the best interests of the child shall be a primary consideration."³

The best interests of the child

The UN Convention on the Rights of the Child (CRC) was unanimously adopted by the General Assembly of the United Nations on 20 November 1989, and entered into force on 2 September 1990. The United Kingdom was a signing party.

Article 3 (1) speaks of "the best interests of the child", the best interests clearly being specified in the Covenant itself in terms of the child's human rights. The Covenant takes into full account the fundamental human rights set out in the Universal Declaration on Human Right, in the International Covenant on Civil and Political Rights (especially Articles 23 and 24), the International Covenant on Economic, Social and Cultural Rights (especially Article 10), and other relevant documents.

The CRC also says that the best interests of the child (specified as human rights) shall be "a primary consideration", that is, to be considered as of first importance. For the rights of the child to be set aside it would be necessary to show that there are at stake fundamental human rights of adults which clash with those of the child, and that there are compelling reasons as to why the rights of the child should in those circumstances have to give way to the rights of adults given the long standing tradition in British society of putting children first.

The Human Fertilization and Embryology Act 1990 (HFEA) requires account to be taken of the welfare of any child who may be born of treatments using donated sperm, eggs or embryos (or, indeed, any other treatments such as IVF regulated by the Act). And since the welfare of the child is an integral part of the best interests of the child, it follows that CRC's insistence that the best interests of the child shall be a primary consideration is consistent with the HFEA.

The child's right to his or her identity

Article 8 of CRC states that parties must "undertake to respect the right of the child to preserve his or her identity... where a child is illegally deprived of some or all of the elements of his or her identity, States Parties shall provide appropriate assistance and protection, with a view to re-establishing speedily his or her identity."

What elements make up a person's "identity"?

Our biological origins are a fundamental element of our identity. That some people might feel that genetic heritage doesn't matter is not relevant here. The nations of the world have decreed that it does matter, and the UK has associated itself with the commitment to respect the right of the child to his or her identity.

What does it mean to be "illegally deprived"? In the context of CRC this means the illegality at stake is that of international law. That is, the child can appeal above the law of the state to which he or she belongs to the law of nations. Given that children born of donor insemination have routinely had their birth certificates falsified with the name of their social father being identified as the natural father, there remains plenty of scope for the UK to provide "appropriate assistance and protection, with a view to speedily re-establishing his or her identity."⁴ The corollary of this is that the State has an obligation to provide birth certificates which are true and accurate, clearly identifying the social and the natural or biological father (or mother as appropriate), and providing all necessary assistance for a child to have that identifying information readily available to them.

In short, since the UK is a member of the United Nations and is a signatory to CRC, children born from gamete and embryo donation must be able to know their true identity, including the biological elements. If the State does not allow this, it would appear to be in contravention of Article 8 of CRC.

Telling the truth

Artificial reproduction using donated gametes and embryos can result in complicated family situations. Combined with shame and secrecy, it can get messy. How can parents decide what to tell their children? What should governments encourage parents to do?

The principle at stake here is telling the truth. As a society, we agree that, in general, it is right to tell the truth, and wrong to tell a lie. Why should it be any different in this case?

Parents choosing to keep the information from their children are taking a great risk. What if the child hears the truth from someone else? What if the truth emerges during a family crisis? And even if the child never finds out, he or she has still been deceived.

Deliberate deception, even with the best of intentions, has devastating consequences for any relationship. Keeping a secret takes energy. It can create a stifling atmosphere in the family. It requires parents to commit to a web of lies.

The Consultation states, without argumentation or justification, that "the question as to whether donor offspring should be told by their family about the means of their conception ... is a matter for the parents themselves to decide".⁵ In our view this is not ethically acceptable. Given that the State has assisted in the procreation of a child, the State cannot simply absolve itself of any further consideration of the best interest of the child where knowledge of identity is concerned. The State becomes an accomplice in lying and deceit when it withholds information that the child has a right to know because the parents have decided that they will lie to their child. In all the circumstances it would seem to be reasonable for consideration to be given to the following proposition: that the State require, as a condition of treatment, that parents give an undertaking that they will disclose the true identity of their child to the child at the appropriate time, and that the State will do its best to advise the child of his or her true origins when the child turns 18 years of age.

Although this may seem like a personal moral decision for the parents to make, the State has an important role to play given its role in the conception of the child. The State can make it easier or more difficult for parents to conceal the truth. If the government is committed to the truth, then regulations can make sure that donors provide all the information and are prepared to be identified to the offspring, that parents know they are required to tell the child the truth, and that the child can find out the identity of the donor.

How does it feel to be a child of gamete or embryo donation?

These children have not had a voice. According to the Consultation Paper most children born from donor gametes or embryos will never know the truth about their origins; while others who do know must keep the family secret.⁶

Many groups commenting on the Consultation Paper will no doubt refer to the anonymous article in the British Medical Journal, "How it feels to be a child of donor insemination". The writer was told at 11 by her parents, and talks now as an adult of her restlessness and anger. She can never find out the identity of her biological father. She writes:

"I would stare in the mirror analysing features that I had not inherited from my mother. I would scour faces in the street, in the supermarket, and at school, desperately searching for similarities in others - older men could be my father, people my age my half siblings. I lived in a surreal world wondering if one of the men passing or teaching me was my genetic father. All I wanted was some information..."⁷

Another child of artificial insemination wrote:

"It's an obsession. I must find my father even if it's only to discover what kind of man sells his own sperm and ultimately his own flesh and blood for $25, then walks away without any thought of the life he may have created. How is a child produced this way supposed to feel about a father who sold the essence of his life so cheaply and is a total stranger?"⁸

No one can predict the strength of emotion that donor offspring, not only as children but throughout their lives, may feel as a result of not knowing who their genetic parents are.

The law must be changed, but not because of emotional personal stories. The emotions are aroused because the rights of donor children have been denied. First and foremost, the issue is one of human rights.

Parallels with adoption

The consultation paper claims that the parallel with adoption is inexact Of course this is true. A child is put up for adoption because the mother or both parents feel they cannot look after the child. No one goes out to get pregnant to give away a child (with the problematic exception of surrogacy). Adoption is a compassionate response by infertile couples and other couples to a tragic situation. Donor conception, on the other hand, is about the intentional creation of a child.

However, this observation is really quite irrelevant. What the adopted child and the child born of donor gametes have in common is the right to know their biological origins which is an integral part of knowing their own identity. Their genetic heritage, and at least one biological parent, is unknown. The courts have accepted that adopted children have a right to know. It would be entirely consistent with that ruling for children of gamete and embryo donors to have their right to know their own identity similarly respected. To deny this out of concern for the donors or legal parents is unjust discrimination.

Universal Declaration of Human Rights, Article 16 (1)
International Covenant on Civil and Political Rights, Article 23 (2)
The United Nations Convention on the Rights of the Child, Article 3 (1)
Convention on the Rights of the Child, Article 8 (2)
Donor Information Consultation, 1.10
Donor Information Consultation, 1.25
"How it feels to be a child of donor insemination" (Anonymous) BMJ Vol 324, 30 March 2002 p797
The Australian, 24th July 1982, cited in Fisher A. (1989) IVF: The critical Issues, Collins Dove, Melbourne.