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12.1. Ethical Considerations in Professionals' Contribution To Policy Development in Assisted Human Reproduction

- Ken Daniels, Ph.D.
Associate Professor, Dept. of Social Work,
University of Canterbury
Private Bag 4800, Christchurch, New Zealand
Email: ken.daniels@canterbury.ac.nz

Introduction

This paper is, in a sense, a reflection on 25 years of work in the field of assisted human reproduction and particularly the area of donor insemination, which is my specialist area of research. Any reflection requires the reflector to stand back and take a long term view of developments. I wish I understood a few years ago what I understand now, in terms of some of the dynamics that have been occurring over those 25 years! I plan to share some of these dynamics and associated thoughts in this paper.

At the moment in Canada, there is a very interesting debate occurring, as politicians move towards introducing legislation to control and/or manage the whole area of assisted human reproduction (Baird 2003). I've been very much involved in those policy developments, meeting with politicians, government officials, health professionals and consumers. It is very interesting to see how that policy has emerged and to reflect on the fact that it is a very similar pattern to that which is occurring in many other countries around the world. The case of Canada can serve as an example to us of how we might look at the area of policy development in assisted human reproduction.

I approach the area of assisted human reproduction and donor insemination as a social scientist with education and training in ethics. This means that my focus has been particularly on the outcomes and impact of assisted human reproduction, particularly on the children and the families that result, and I want to illustrate that as I develop this paper.

Over the last 25 years, I have found myself in a position where I have been advocating for change. The more I have advocated for change, the more I have become aware of the dynamics of power and particularly the power and authority of professionals, mine included, in terms of their impact on policy development. Over those 25 years I have frequently found myself in conflict with other professionals, particularly professionals who come from the discipline of medicine. While there are many doctors who I regard as very close friends and very good colleagues, there is a sense in which the medical dominance of the culture surrounding donor insemination and assisted human reproduction has, and continues to have, a very powerful impact on the way in which the policies surrounding this area have and are emerging (Greene, 2003).

In my presentation, I want to briefly introduce the issue and look at how it is perceived, look at the ways in which the issues are responded to, then to consider the arguments or perspectives that are used to support these responses.

The Issue Of Policy Relating To Donor Insemination

First of all then, the issue and how it is perceived. Remember that the focus is particularly on donor insemination but there are many senses in which this area and the issues emerging from it can be generalized to other areas of assisted human reproduction as well. The central issue is: Do the offspring have the right to be told that they were conceived as a result of the use of donor insemination? (Daniels and Haimes, 1998) You will note that I do not refer to 'children' as much of the literature does, but rather to 'offspring'. This is because if we use the term 'children', we take the risk of infantilising then and this leads to the thought that they need to be protected. I'm talking about those people who were children and who have, or will, become adults and what the issues are for them in terms of having the right of access to their genetic history. This occurs at two levels.

First of all, do they have the right to know that they were conceived as a result of donor insemination and secondly, do they have the right to access information about the man who provided the semen for them (Daniels, 1995) or in the case of oocyte donation, the woman who provided the eggs for them?

Genetics are becoming increasingly important as we are only too aware. We are beginning to realise that in terms of people's lifestyles, to know your genetic history is to have a very powerful and increasingly powerful control over some aspects of your life, particularly, if one takes the example of cancer. If you know your parents have had cancer, then there may well be work situations or localities that you will seek to avoid. In the case of donor insemination, people who do not have access to half of their genetic history are of course deprived of that kind of information.

The pervading culture that surrounds donor insemination around the world is that this practice should be undertaken in secrecy and that the offspring should not have access to this kind of information. I've been challenging that for the last 25 years.

There is, however, an evolving policy, which is challenging that culture. It is a policy that is reflected at government level with the introduction of legislation, at the professional level in terms of professionals advocating for change and at the consumer level in terms of those who were born, or who are the parents of those who were born, as a result of donor insemination. In several jurisdictions there has been a move to introduce policy and legislation that will open up access to information for the offspring. This is being strongly resisted by many in the medical fraternity. It is interesting that this should be the case and I want to try to explore some of the ethical issues associated with that.

A Focus On Professionals

This paper's focus is not on the government initiatives or the consumers but rather on the professionals in their role and influence on policy development. There is conflict between professionals from different disciplines and this conflict is reflected in the emergence of the evolving policy. I want to try and set the scene by suggesting that by and large, my medical colleagues see donor insemination as a means of treating infertility. I and many of my colleagues in the social sciences and counseling, ethics, psychology, social work, psychiatry etc. see donor insemination being about treating infertility and building a family.

From the medical point of view, this means that a biomedical model is drawn on, in comparison to a biopsychosocial model used by social scientists. For the biomedical model, the emphasis is on the couple, whereas in the biopsychosocial model, it is on all of the participants and particularly the family to be. In terms of the couple, the emphasis is very much on the stigma and shame that has been associated with infertility, particularly with male infertility, the desire to protect people from that shame and stigma, and the importance of privacy which allows people to operate in the way in which they choose to. One of the dangers of this, however, is that the use of secrecy means that the stigma and shame are never challenged.

In contrast, in terms of the family to be, the emphasis is on the relationships between the different parties and what it means to have secrets in families. What are the needs of the different individuals involved? What are the rights of those different individuals? (Daniels, 2002).

All of this tends to lead to a culture of secrecy in relation to the biomedical model and to a culture of the sharing of information in the biopsychosocial model. We therefore have two models but of course these models that have lots of variations, as do the individuals that adopt the models, so one can't always say that every doctor is going to take a biomedical model/view or every social worker, counselor or ethicist is going to take a biopsychosocial one. These models are portrayed in Figure 1.

12.1 Figure 1

Responding To The Issue

<0p> So how do we respond to this issue of information sharing and secrecy? First of all, there is the challenge as to whether this is a private trouble or a public issue. By that, I mean, is this something that only concerns the couple and the clinician who is treating them or does it have public and social ramifications. Is this an issue of public policy? The response is that in many jurisdictions, this is now being recognized as a matter of public policy. Over the last couple of days, we've heard the word 'policy' mentioned on many occasions, not just in relation to assisted human reproduction, but to almost all of the topics we have been considering. It seems to me that one of the central issues for bioethicists, is how do we have some impact on the policies that governments are determining?

When you think about the issue of donor insemination, there are in fact a large number of groups who have an interest in this - the participants of course, the families, the legal profession, the medical profession, those who are in the social sciences and those with an ethical perspective. And all of these contribute, if we adopt a holistic perspective (see Figure 2).

12.1 Figure 2

The debates that go on in this area are very interesting. I have found it very difficult to get into a debate on the moral issues with anybody from the medical or scientific community. What they tend to do is to resort to pragmatics. 'If in fact you open up this whole area and make it possible for offspring to find out who the donor was, we won't have any donors.' So a pragmatic issue and argument is put forward: 'if you do this, then there will be no supply of donors and that means that the service will end'. It's a pragmatic answer or argument that is being put forward to what is often presented as a moral issue. I, on the other hand, and many of my colleagues have been trying to argue in terms of the rights and responsibilities focus. On some occasions we have been successful and on other occasions we haven't. I think when we start to talk about the rights of children we are almost certainly going to fail because it's very hard for people to think of children in terms of rights to information. But if we present the argument in terms of the rights of adults to access information about themselves, then the issue is seen in a somewhat different way.

There is also an argument that is put forward as to whether we see this as an issue concerned with the here and now, in other words just treating the infertility, or whether we are thinking about the consequential issues that arise in the future. And that if we are taking a futuristic perspective, we have to look at the rights and needs, not just now, but now and in the future.

The power of professional groups is very obvious in relation to policy development in this area. I summarize it as being a debate between the medical and the psychosocial perspectives, particularly when it comes to the policy dimensions. To try and illustrate this, I have taken the Codes of Ethics of the New Zealand Medical Association (2002) and the Aotearoa New Zealand Association of Social Workers (1993). Aotearoa is the Maori name for the country that I am part of. Aotearoa also represents the language of the indigenous people of New Zealand and is now an official language of our country, along with English. Figure 3 highlights the two Codes of Ethics.

12.1 Figure 3

In relation to the responsibility to patients and clients, both Codes of Ethics are very similar. Then there is talk about professional responsibilities for doctors and for the Social Workers Code, there is responsibility to the wider community. This is a major difference and highlights the contrasting views concerning the issue of social justice and this is the issue to which we now turn.

The New Zealand Medical Association Code of Ethics talks very strongly about the four moral principles of autonomy, beneficence, non-maleficence and justice. But the way in which it describes all of these is very much with an individual focus, looking at the needs of individuals - the professional's relationship with the patient. Justice is mentioned but it is talked about in terms of incorporating the notions of equity and fair distribution of resources - not the issue of whether there are resources at all but rather, how they are distributed.

In contrast, the Association of Social Workers has its focus on the responsibility to the wider community. Here the issue is one of social justice, rather than just justice. Social justice comes out very strongly and it means that those people who belong to the Association are expected to advocate for social justice, for inclusion and choice and to have particular concern for disadvantaged minorities, to prevent and eliminate discrimination, to advocate for policies and legislation that promote social justice, to encourage public participation in the development and decision making concerning social policies and to work to change the structures of society that perpetuate injustice.

All of those dimensions, coming under that framework of social justice, require me for example to be working for social change and that means the perspective that I'm involved in challenges those who are looking at very much an individualistic model. I want to suggest to you that when it comes to policy development, those who advocate from a biomedical model tend to take this very personal, individualistic focus, rather than a social focus. They focus just on the people who are in front of them, rather than taking the couple in front, plus the children who may result from the treatment that occurs and the family that will be formed.

Conclusions

Codes of Ethics tend to be focused on individuals and social justice is not very well developed. And yet, policy makers rely very heavily for advice on professionals who come with this individual focus. The contribution of professionals to policy development means that the professionals become elites. They have a lot of power and authority. My understanding of a profession and certainly the sociology of professions suggests that a profession is going to have a lot of power and authority and one of the things about the community giving that profession power and authority is an expectation that it will be used responsibly, but responsibly to whom? Just to the individuals or at a societal level as well? Information sharing as a case study suggests to me that the perception of the issues that we face, in other words how we look at this issue in the first place, is going to influence the responses that people make. And the understanding of the conflicts between doctors and professionals in the psychosocial field need to be understood, first of all in terms of how we perceive the issue and then what basis do we draw on in terms of trying to resolve that issue.

References

Aotearoa New Zealand Association of Social Workers. (1993). Code of Ethics. Auckland: Aotearoa New Zealand Association of Social Workers Incorporated.
Baird, P. (2003, May 26). About Time: The Reproductive Technology Bill (Editorial). Ottawa Citizen.
Daniels, KR. (1995). Information Sharing in Donor Insemination - a conflict of needs. Cambridge Quarterly of Healthcare Ethics, 4, 217-24.
Daniels, KR (2002). Towards a family approach to donor insemination. JOGG (Society of Obstetricians and Gynaecologists of Canada), 24, (1), 17-21.
Daniels, KR. and Haimes, E. (Eds.) (1998). Donor Insemination: International Social Science Perspectives. Cambridge: Cambridge University Press.
Greene, C. (2003, April). Report on Bill C-13. Canadian Society for Reproductive Medicine and Sciences (p2).
New Zealand Medical Association (2002). Code of Ethics [Electronic version]. Retrieved June 20, 2003, from www.nzma.org.nz/about/ethics.html

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