- Ken R. Daniels, Ph.D.
Department of Social Work, University of Canterbury, Christchurch, New Zealand
Eubios Journal of Asian and International Bioethics 8 (1998), 146-148.
Is it ethically acceptable to keep a secret from someone else, especially if that secret relates to the origins and identity of the person concerned? My contention is that most, if not all people attending a conference on ethics, would answer that it is not ethically acceptable.
For one person to have and hold a secret over another person, means that the holder of the secret is in a more powerful position. Knowledge is power. Power over other persons challenges the ethical principles of, respect for human dignity, individual autonomy, equality and the right to information about oneself
This paper explores how persons, who were conceived as a result of gametes provided by someone other than those whom they regard as their parent/s, have been and continue to be deprived of this information. Two additionally disturbing facts are that this policy of secrecy has, in many instances, become institutionalized by laws, professional standards and practice, and parental behaviour, and secondly that such policies and practices have in many instances, been established in the belief that they are in the "best interests of the child" or for the "welfare of the child".
Both of the above phrases use the word 'child', whereas I began by talking of 'persons' conceived as a result of third party gametes. I suggest, along with Rowland (1984), that as a result of focusing on the child, it has been easy to slip into adopting a paternalistic or maternalistic position - that children are vulnerable and need to be protected. This desire to give protection is, I believe, based on adults uncomfortableness with infertility, the practices of semen, oocyte and embryo donation and their belief that there is something 'wrong' , 'stigmatizing' or 'marginalising' about being conceived in this way. If persons, so conceived, knew of the nature of their conception, it is argued (Lansac 1993), then this would be damaging to their identity and to family relationships. There is now growing evidence (Baran and Pannor, 1993) that in fact the contrary is the case, with a number of offspring saying that they have been psychosocially damaged by the secrets that have been part of their families. This has lead to many professionals in the field, especially those with knowledge of the psychosocial arena, advocating that parents should share this information with their children as they grow and develop.
This paper will discuss the interplay of policy, law and ethics
in this field, explore the focus on the child and in particular
the needs and rights of the child.
The interplay of policy, law and ethics,
The topic, the best interests of children in the field of assisted human reproduction, (AHR), could be being discussed at a medical conference, a law conference, a social policy conference, a counsellors/social workers/psychologists conference or a conference on the family. Our focus today is ethics, but what needs to be recognized is that there are many disciplines that have an investment in and concern with this topic. The practice of gamete and embryo donation is carried out by health professionals, and most notably doctors. The relationship between policy makers, the law and medical practitioners has always been problematic, especially in the field of AHR. See for example the debate in Sweden regarding the introduction of legislation on AHR (Daniels 1994a, Daniels and Lalos, 1995). While not wanting to oversimplify the reasons for this, it is clear that one of the central issues, is the professionals' right to provide the treatment of choice versus the social policy and ethical considerations in terms of the impact of such treatment beyond those immediately involved.
Governments in almost all western countries have decided that developments in AHR do raise social policy and ethical issues, and as a result almost all of them have set up committees or commissions of enquiry to investigate the issues and often to make recommendations as to the action that they think governments should take. Knoppers and Le Bris (1991) reviewed the reports, bills and legislation from around the world, their data base consisting of over 100 such documents. As a result of their analysis they were able to describe 12 areas of general consensus that emerged from these reports as well as 6 areas over which there was little common ground. They suggested that the areas lacking consensus reflected differing cultural, social, economic and religious differences. Two of the 6 areas are directly related to this topic - (1) the eventual access by the child to information on the donor and the kind of information accessible; (2) the keeping of registers of information regarding the involved parties. What is clear from these findings is that the issue of information sharing (Daniels et al., 1997 ) is contentious and therefore worthy of continuing exploration.
In response to recommendations from their committees/commissions a number of countries have introduced legislation to manage/control the field of AHR. (For a review of such legislation see Blank (forthcoming)). Sweden, in a very progressive legislative move ( 1984 ) provided for offspring to have access to the identity of their donor when they reached "maturity". This legislation was greeted with major opposition from many in the medical fraternity (Daniels 1994) and thirteen years after the legislation many doctors continue to oppose it. Austria, in 1992 and the State of Victoria in Australia in 1995 have adopted a similar legislative position. On the other hand Norway (1987) and Spain (1986), ( Walters (1987)), are examples of countries that have legislated for the anonymity of the donor and therefore for offspring not being able to discover the identity of the donor.
Interspersed with the policy and legal considerations ethical concerns appear frequently. Reports such as Proceed with Care from the Canadian Royal Commission (1993 ), began by enunciating the principles which formed the base from which all their considerations developed. These were: individual autonomy, equality, respect for human life and dignity, protection of the vulnerable, non-commercialization of reproduction , appropriate use of resources, accountability, and balancing individual and collective interests
Other reports have similarly identified the ethical principles
that informed their deliberations. There has been little debate
about the ethical principles, but there has been debate concerning
which policies appropriately emerge from these principles. Consideration
of issues in AHR represents the interplay of policy, law and ethics
and this of course is reflected in discussion of the best interests
of the child.
The focus on the child
The reason that a couple or individual use AHR treatment is to conceive and give birth to a child. The child is therefore the end result of the treatment. Decision making leading up to the treatment is, however, a matter for the adult parties involved. Questions arise concerning the future child's needs, rights and welfare and all committee/commission reports devote attention to this matter. The phrase "the best interests of the child" is frequently used to indicate the child's needs and welfare should be either a primary or major consideration in all decision making. Other phrases such as "the welfare of the child", "the paramountcy of the child", "the rights of the child" and, "the needs of the child" are used in reports to provide for a similar emphasis.
It needs to be acknowledged that at the policy and ethical levels such phrases and notions have considerable appeal, but at the treatment level, it is often difficult for the adult parties to see beyond their own needs and interests. After all, there is no guarantee that a child will result from the intervention, so considering their best interests is very difficult. It may also seem to prospective parents and some professionals, that putting in place procedures to safeguard the welfare of a future child is obstructionist and an unnecessary imposition - after all others deciding to have a child are not subjected to some of the psychosocial assessments or investigations that they are.
Some reports have taken very strong stands on this issue, the West Australian Reproductive Technology Working Party (1988) saying that "ART will not be used unless conditions exist, as far as possible, for the welfare of the child." The Human Fertilization and Embryology Act (1990), in the UK, says that a licensed treatment centre must not provide treatment for a woman, "unless account has been taken of the welfare of any child who may be born ..."
One of the difficulties that this area highlights is lack of agreement on what either the phrases mean or encompass. In Australia the National Bioethics Consultative Committee, in its review of Australian and overseas reports concluded "Interestingly, all the reports - those variously recommending the provision of no, some, or all information - indicated their recommendations reflected an over-riding concern with the best interests of the children involved. This suggests that what constitutes the "best interests of children" is not self evident but subject to different interpretations and constructions." (1989: Appendix 4 p.1).
Furthermore Blyth (1995) in a study of how treatment centres and inspectors in the UK functioned, concluded that "The study highlights the difficulties faced by staff in licensed treatment centres and by HFEA inspectors in developing coherent practices to meet the requirements of Section 13 (5) of the Human Fertilization and Embryology Act. Even without the benefit of hindsight such difficulties might have been anticipated given the lack of consensus about the meaning of the welfare of the child as it relates to assisted conception." (pp.434 -5).
While it is commendable that reports and legislation in some
countries have sought to highlight and encapsulate the 'child
focus', it needs to be acknowledged that in relation to access
to information about one's origins, it is when persons are adults
that this is likely to become an issue.
The needs and rights of the person conceived as a result of third party gametes
This paper began by focusing on secrets concerning the origin and identity of persons conceived as a result of third party gametes. We have discussed the policy and ethical implications of such secrets. The arguments for challenging the prevailing practice of secrecy fall into two areas, those based on needs and those based on rights. While there is not time within this presentation to traverse these arguments, it is important to note that a needs perspective tends to be influenced by a welfare ideology and rights by a justice ideology (Daniels 1994). Haimes (1992) makes an important point when she says, "If the language of rights replaces that of needs ... at least two things happen; first, a social dimension replaces the individualized claims of ..."psychological" needs; second, the idea that an exception is being made for this particular group of people is removed and is replaced instead by the idea that they are simply being brought into line with the rights enjoyed in a much more routine manner by most others in society." (pp. 140).
The arguments concerning secrecy and openness in gamete donation, are outlined in a paper by Daniels and Taylor (1993) and in the contributions of by 17 authors from around the world who responded to this paper in an international roundtable forum. A very helpful review of the rights issues in relation to 'identity and the child of the reproductive revolution'; has been recently presented by Freeman (1996). He argues very powerfully for the rights of persons conceived by third party gametes to know their identity.
One of the difficulties faced in this area however, is that protagonists of the three positions that have tended to be adopted on this issue: the 'child' should not be told anything, knowledge about the nature of conception should, be shared, and, knowledge of the conception and of the identity of, the gamete provider should be shared; have used the welfare of the child and best interests of the child arguments to support their positions. Haimes (forthcoming ) points out that it is not possible to arbitrate between the above positions, because each invoke the same underlying claim.
Knoppers and LeBris (1991), on the other hand argue that the right to privacy is a fundamental human right ( but I would suggest, that while this is true in the USA and some other countries it is not universally accepted ) and that if a state is to interfere in the privacy and intimacy of family relations in order to force greater openness, this may be intruding on the freedom of procreative decision making. They therefore argue that in relation to knowledge about origins, there are conflicting rights and ethical principles. This is reflected in many of the commission reports where the best interests of the child are espoused, and yet there are recommendations concerning the anonymity of the gamete providers. We might conclude that the best interest of the child is based on particular views of best interests of children. As suggested earlier, if we shift the focus to the needs and rights of those conceived in this way - when they are adults - then the issue has another face to it.
The advent of support groups for parents who have used third
party gametes, the increasing number of persons who are growing
up knowing that they were conceived in this way, and the challenges
to health professionals, and particularly doctors, over the advice,
they give in relation to information sharing, means that this
area of ethics, policy and law will be the subject of continuing
Austrian Act on Procreative Medicine act 275 (1992) May 14.
Baran, A. and Pannor, R. (1993) Lethal Secrets. The Psychology of Donor Insemination. Problems and Solutions , Amistad New York
Blank, R. (1998) Regulation of Donor Insemination in International Social Science Perspectives on Donor Insemination (eds) Ken Daniels and Erica Haimes. Cambridge University Press.
Blyth, Eric (1995) The United Kingdom's Human Fertilisation and Embryology Act 1990 and the welfare of the child: A critique. The International Journal of Children's Rights 3: 41 - 438.
Canadian Royal Commission on New Reproductive Technologies (1993) Proceed With Care. Vol.2.
Daniels, K.R. (1994) Assisted Reproductive Technology Policy in New Zealand: Needs, Rights and Responsibilities. Public Sector Vol.17. 3 :22-25.
Daniels, K.R. (1994a) The Swedish Insemination Act and Its Impact. Australia New Zealand Journal of Obstetrics and Gynaecology Vol.34. 4: 437 - 439.
Daniels, K.R., & Lalos, O. (1995) The Swedish Insemination Act and the availability of donors. Human Reproduction, 10 (7) 1871 - 4.
Daniels, K.R., Lewis, G.M., & Curson. R.W. (1997). Information sharing in semen donation: the views of donors. SSM 44: 673 - 680.
Daniels, K.R. & Taylor, K. (1993) Secrecy and Openness in Donor Insemination Politics and Life Sciences August 1993: 155 - 170.
Freeman, M. (1996) The new birth right? The International Journal of Children's Rights 4: 273 - 297.
Haimes, E. (1988) The making of 'the D.I. child' in International Social Science Perspectives on Donor Insemination (eds) Ken Daniels and Erica Haimes. Cambridge University Press.
Haimes, E. (1992) Gamete donation and the social management of genetic origins. in Stacey, M (ed). Changing Reproduction. Sage Publications, London.
Human Fertilisation and Embryology Act. (1990). Her Majesty's Stationery Office, London.
Knoppers, B M., LeBris, (1991). Recent advances in medically assisted conception: legal, ethical, and social issues. AJLM 17, 329 - 61.
Lansac, Jacques (1993) One Father Only: Donor Insemination and CECOS in France Politics and the Life Sciences August. 185-186.
Report of the Select Committee appointed to inquire into the Reproductive Technology Working Party's Report. (1988) Western Australia Legislative Assembly.
Rowland, R. (1984) Attitudes and opinions of donors on an artificial insemination by donor (AID) programme. Clinical Reproduction and Fertility, 2, 249-259.
Swedish Law on Artificial Insemination, No. 1140/1984.
The National Bioethics Consultative Committee, Reproductive Technology (1989) Final Report of Australian Health Ministers Formerly Released Pending Consideration by Government. Appendix 4 p.1.
Victoria, Parliament (State of) Infertility Treatment Act (1995) June 27.
Walters, LeRoy (1987). Ethics and New Reproductive Technologies: An International Review of Committee Statements The Hastings Centre Report (June), 3 - 9.