1. Guido Pennings Ghent University, Belgium Leiden, Medisch Centrum Kinderwens, 4 October 2013 Ethical considerations on sperm, oocyte and embryo donation

2. History of gamete donation 1980secrecy and anonymity -lies and secrets in the family -harmful to the children: late informed children develop serious psychological problems 1985enforced identifiability of the donor - responsibility of society to protect the rights of children - the child has the right to know its genetic origins - the child needs to know its roots to develop an identity

3. History of gamete donation 1990 measures are taken to reduce secrecy -directive counselling of parents towards openness about the donor conception 2000 organisation of voluntary donor and donor sibling registries - genetic half-siblings have the right to know each other and to make a (large) family -past donors are encouraged to come out of the closet 2013 donor anonymity is abolished retroactively - for justice reasons, past donors’ identity should be revealed - knowledge of the identity of the donor is too important for the child and this overrides the wishes of the donor

4. History of gamete donation 2014 the possibility of secrecy by the parents is abolished - the name of the real father is put on the birth certificate - parents should no longer be allowed to lie to their children -all donor children can construct a truthful identity 2015 the child is informed about the donor at age 6 - informing children as early as possible proves to be the best strategy to prevent harm - the parents, assisted by a social worker, will tell the child about its conception when it goes to primary school - the age to inform the child was brought down from 18 to 16 to 12 and later to 6 in order to allow the child to build its identity already from a young age

5. History of gamete donation 2016 donors are obliged to have regular contact with their offspring -The idea that the name of the donor alone would suffice proved to be wrong. In order for the child to develop its identity, the child should have regular contact throughout the life span -Originally the donor was asked to provide regular updates of information about him/herself but this was not enough for the children -Donors and recipients are also encouraged to meet before the donation to find out whether they share the same views about the upbringing of the child (as it is done in some states for adoption)

6. History of gamete donation 2017 measures are adopted to promote the development of a meaningful relationship between the real parent and the child -a meaningful relationship is important for the welfare of the child -courts recognize that the genetic link means that a certain degree of intervention by the real parent in the life of the child is recommendable -the social parents have come to realise that, for the sake of their child, they should allow the genetic parent to play a role in the child’s life

7. History of gamete donation 2020 gamete donation is prohibited -a child has the right to be raised by its genetic parents -gamete donors are like birth parents. However, adoption is a system that tries to solve a problem for a child that is already there. In gamete donation, we create a problem that was not there in the first place. Children should not be placed in a situation where they are not brought up by their parents. -social parents are in fact foster parents who look after the child of the donor.

8. History of gamete donation Doom scenario? Suggested reading: Victoria Law Reform Committee (2012) Inquiry into access by donor-conceived people to information about donors. March 2012. Parliamentary paper, No. 120. Parliament of Victoria, Australia.

9. Genetization of relationships This evolution is based on one rule: genetics is primordial It demonstrates the increasing genetization of relationships. It also confirms the norm of the heterosexual nuclear family. Parents = genetic parents; truth = genetic truth; identity = genetic identity This position is defended in two ways: A) deontological arguments: the child is wronged by not knowing its genetic origins B) consequentialist arguments: the child is harmed by not knowing its genetic origins

10. Deontological arguments All kinds of principles such as a right to privacy, or theories on good parenthood, reproduction … lead to different rights. UN Convention on the Rights of Children: Art. 7 § 1. The child shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by his or her parents. ‘right to know his or her parents’: ergo: ban anonymity ‘right to be cared for by his or her parents’: ergo: ban gamete donation Those who say that they accept gamete donation but are against donor anonymity read ‘parents’ as genetic parents in the first part and ‘parents’ as social parents in the second part.

11. Deontological arguments All kinds of rights and obligations can be proposed based on different religions, ideologies and world views. There is no limit to such rights. Many religions forbid gamete donation for all kinds of reasons (respecting the family line, breaking the sacred bond between man and woman, severing the link between sexuality and reproduction etc.). These rights and principles are not founded on the impact on the well- being of the persons involved. Main problem: there is no consensus on the theories, and consequently not on the principles. How to handle this pluralism?

12. Consequentialist arguments A good act/rule is an act/rule that increases the well-being (happiness) of the persons involved (and/or that does not harm them). Anonymity should be lifted because it harms donor offspring. The child needs to know the name of the donor to build an identity. Which theory on identity is adopted? What does the statement mean? Does it mean that - children who do not know that they are donor conceived cannot build an identity? - children who know that they are donor conceived but do not know the name of the donor cannot build an identity?

13. Empirical evidence Donor identity is neither sufficient, nor necessary for identity development. 1. children who are not aware of their donor conception are not harmed. 2. children who are informed early in life about their donor conception are not harmed by not knowing the name of the donor. 3. some persons who are informed about their donor conception later in life develop psychological problems and want to know more about the donor. Main motivation: curiosity (Jadva et al., 2010). In order to label curiosity as a need, we need a theoretical framework. None is offered at the moment.

14. Empirical evidence As a consequence, every wish of donor offspring is transformed in a need, and every unfulfilled need into a harm. WISH/DESIRENEED UNFULFILLED NEEDHARM

15. Slippery evolution know about identifiability contactability life-long interaction meaningful relationship parenthood

16. Empirical evidence Two important questions: Where is the evidence of these needs? Where are the other parties in this story? The interests of the child are primordial. As a consequence, the interests of all other parties are ignored or downplayed. By focussing on the rights of the child, the child is isolated from its family and sometimes even positioned against the family. The social context in which the family lives is completely ignored when the question on the best interest of the child is considered.

17. Empirical evidence The whole process has started with the call for help of some donor children who wanted to find out more about their donor. While the wish to help these people is understandable, it is far from obvious that the solution is to lift donor anonymity. -we cannot generalise this wish to all donor offspring -the people that we talk about now may be only a small fraction of all donor offspring -this response may create more problems for the children (and parents) who do not have the same wish to know, contact or otherwise engage with the donor

18. Identity development The lack of theoretical foundation of the identity issue is crucial. Identity development involves three levels: A. An intrapsychic component: current focus B. Relationships within the family C. Relationships within the social world beyond the family (Grotevant et al., 2000) B. The larger family What kind of identity will a child develop when it grows up in a family that does not recognise him or her because he/she is not genetically related, is ‘no family’, is a bastard? What in lowly educated families, in muslim or other religious families, …?

19. Identity development C. Society as a whole Western society bases kinship ties primarily, if not exclusively, on genetic relations. This dominant kinship narrative marginalizes donor children (it renders their identity development more difficult because of their status) and emphasizes the need to know the genetic parents. Donor identifiability reinforces the importance of the genetic link. This genetization in society undermines the donor practice and will do so even more in the future.

20. Conclusions The debate on donor anonymity shows the fundamental disagreement about the importance of genetics in the establishment of family relationships. The ideas supporting donor identifiability offer no clues on how to limit the ‘needs’ of the child and on where to stop. The underlying principle of genetization of relationships is fundamentally opposed to the basic idea of gamete donation: your parents are the persons who raise you