Sex and Science: The ethical implications of assisted reproduction

The National Centre for Health and Social Ethics Auckland University of Technology
26 June 2003

Science has never been for the faint hearted. People expressed their dislike for the new by making Galileo recant. When the small pox vaccination was introduced there were riots in the streets. In some ways the situation has changed and in other ways it has not. The general public probably sees that science has made our lives better and the intent of scientists is to do good. The majority would also say the pace at the moment is too fast to keep up with and too fast for effective regulation.

I chair the Bioethics Council that was established in 2002 as a ministerial advisory committee. What I say today is a personal view and does not reflect the position of the Council. Our terms of reference are closely based on the recommendations of the Royal Commission on Genetic Modification. The Council is not a regulatory body and its key responsibilities are

• To provide independent advice to Government on biotechnological issues involving significant ethical, spiritual and cultural dimensions
• To promote and participate in public dialogue on ethical, spiritual and cultural aspects of biotechnology and enable public participation in the Council's activities
• To provide information on the ethical, spiritual and cultural aspects of biotechnology.

In effect our role is to advise, engage and inform about emerging technologies.

The proposed legislation on assisted reproductive technology is very important. We need a framework for decision making over the use of human embryos in research, germ line genetic modification, sex selection and the constraints, if any, on the commodification of reproductive material and surrogacy.

Since the legislation was first drafted in 1996 there have been many developments.

• Expanding research on xenotransplantation, stem cells (both embryonic and adult) and cloning. These issues have widened the original intent of the legislation.
• The Royal Commission on Genetic Modification and its key recommendation of 'preserving opportunities'.
• Considerable debate and challenge to some aspects of ERMA decision making processes.
• The Government has identified biotechnology as a key area for its growth and innovation strategy.

The Government has recognized the importance of public involvement in dealing with emerging technologies and has expressed its commitment to that principle in the biotechnology strategy where 'community engagement' is one of its goals. Scientists have been prone to think that the essential task is to inform the public who will then understand and presumably give their support. The truth is that the public tends to ask questions the scientists never thought of.

Lay knowledge is knowledge about human fallibility or knowledge based on past behaviour of institutions responsible for the development of technological innovations. A study of public perceptions of agricultural biotechnologies in Europe showed that participants did not express entrenched opinions 'for' or 'against' GMO's. Ambivalence was the overwhelming reaction expressed. People did not ask for 'zero risk' or full certainty but they felt strongly that inherent and unavoidable uncertainties should be acknowledged by expert institutions and taken into account in decision-making. It was the denial of uncertainty which participants found disconcerting and untrustworthy. The restoration of trust will require not just better Public Relations but more profound changes in institutional culture and practice.

How could the government strengthen what might be called a whole of government approach in the Assisted Reproductive Technology legislation? In the UK there is the Human Fertilisation and Embryology Authority that deals with assisted reproductive technology issues. In comparison the Ministerial Advisory Committee to be set up under the HART legislation seems a rather minimalist response but on balance I believe some such body is necessary.

• There needs to be a greater commitment to public involvement in discussions of new technologies and this should be a strong part of the HART legislation. Currently the requirements for the ministerial advisory committee are too discretionary and inconsistent with the government's expressed commitment to public dialogue around emerging biotechnologies.
• The respective responsibilities and the relationships between the Ministerial Advisory Committee, the Bioethics Council and other ethics bodies need to be considered carefully. I am in favour of an integrated approach that recognizes that biotechnology does not fit neatly into the classic distinctions of health/ research/ environment/ agriculture. For example, xenotransplantation involves both human health and animal welfare issues. Likewise issues of intellectual property rights involve the need to encourage innovation but also the need to ensure that a public health system can afford access to medical interventions. This would be the case in countries that cannot afford the medications for HIV/Aids.

The Ministerial Advisory Committee needs to be in a working relationship with the Bioethics Council. As I have said we must recognize that biotechnologies collapse across traditional demarcations. The Bioethics Council must also ensure that ethical, cultural and spiritual considerations are part of the Advisory Committee's ongoing consideration. This is a personal view but the Bioethics Council could consider running a public dialogue and informing process on items selected from the list in clause 36 of the bill. This could cover the creation and use of hybrid embryos for non-reproductive processes, the use of embryos outside the human body in human reproductive research and assisted reproductive procedures, germ line genetic modification, storage of human gametes or embryos, the use of gametes derived from foetuses. We could also include future watch items such as using parthenogenesis with human eggs. The process would certainly fulfil our terms of reference and the results could inform the debates of the Ministerial Advisory Committee.

Comment on the HART Bill

• Principles.
  There are six principles and none of them is what I would call an overriding principle. They are to be considered in their entirety and so we should call them general principles. The preamble states that 'all persons exercising powers or performing functions under this Act must be guided by each of the following principles'. The legislation is about the choices that authorized persons and advisory bodies make.
• (a) The health and welfare of children born as a result of the performance of an assisted reproductive procedure shall be paramount in all decisions about that procedure.
  Granted that the interests of the child are central to our concerns, note that the health and well being of the children concerned shall be paramount. The word is much stronger than saying the well being of children should be given priority. My dictionary says paramount means 'above all others in rank, order or jurisdiction.'
• (b) human health, safety and dignity should be preserved and promoted.
  Presumably this is a safeguard for the mother. The assumption is that a woman would not undergo a procedure that would place too much risk on her.
• (c) no...procedure should be performed on an individual and no...research should be conducted on an individual...unless the individual has been given the opportunity to make an informed choice to submit or to refuse to submit to the procedure or the research.
  The principle tries to balance the needs of a child-to-be-born with the rights and freedom of an adult to make choices. What level of risk can an individual take if that risk affects a future child? We should note that once a child is born, parents are rarely constrained in their risk taking activity even if it affects the children.
• (d) Donor offspring should be made aware of their genetic origins and be able to access information about those origins.
  There should be no compulsion on such offspring but the principle does not tell us where responsibility would lie if parents did not wish to disclose genetic origins to their natural children.
• (e) the needs, values and beliefs of Maori should be considered and treated with respect.
  For some these words might be an invitation to do nothing. Needs of Maori, like the ethical, cultural and spiritual perspectives specified in (f) should not so much be considered and treated with respect as accommodated. In other words there has to be active provision for the particular needs of Maori.
• Commercialisation
  11 (1) Every person commits an offence who gives or receives, or agrees to give or receive, valuable consideration for the support of an embryo or human gamete. Note the different approaches internationally. The USA allows trade in such matters, Europe does not. In NZ we donate blood or an organ, we do not sell them.

There seems to be two approaches to the issue of the commercialization of embryos and gametes and of surrogacy.

1. individuals should be free to make their own choices about whether or not to sell their reproductive tissues and to charge for their services in gestating a child. This is not something in which the state should intervene; nor is it something that should be criminalised.
2. the use of reproductive abilities and reproductive body parts and tissues should not be in the commercial realm. As with blood and organ donation, the exchange of tissues should remain in the 'gift' and altruistic domain.

The arguments in this particular debate involve ethical and value judgements about what should be in or out of the commercial sphere. From that flow a number of consequential arguments such as the practical implications of trade in these materials adding costs to the end-users of the services and the potential for profit incentives to be offered to the most vulnerable members of society and so expose them to exploitation by those best able to afford the costs.

• The Ministerial Advisory Committee
  33 (1) The Minister may, after consultation with the Minister of Woman's Affairs, by written notice, appoint any person to be a member or chairperson of the advisory committee.

As it stands the Minister of Health who may or may not consult with the Minister of Womans' Affairs can make appointments to the committee without any public consultation or calling for nominations. On the other hand the advisory committee is required to consult before giving advice to the Minister but it is not broad based consultation. Appropriate consultation within the public before making appointments and before giving advice would strengthen confidence. The Bioethics Council is required to make its advice public. A similar provision should be considered for this advisory committee.