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Discussion on Law and Policies

Yi: I am from Sang Wook Yi from Korea and my co-chair is Wang Yanguang from China. The first speaker in the session on Law and Policies is Ken Daniels. Are there any questions?

Anstey: I agree with your paper. My question is related to what is implicit in your talk about sharing information about donors. Do you think that begs the question about genetic ties being ethically relevant? So if I were one of these babies conceived from donated sperm, and if I then wanted to look for my father. That is a genetic link, and why is it significant. What's your position on that?

Daniels: A genetic link is significant in the minds of many offspring. The research being carried out now is telling us that many of these people that are conceived in this way are very interested in knowing, in the same way adopted people would about knowing something more about their genetic factors. Some of them don't want to meet the donor, but they do in fact want to have some information. I think that will become increasingly important as knowledge of genetics increase.

Rei: How do find a balance when it comes to the rights of the recipient to know about the donor? On one end, the recipient may want to know about just the genetic factors of the donor. On the other end of the range, the recipient may want to know about the social identity of the donor. Where do you draw the line? Can you please elaborate more on the rights of the donor in this?

Daniels: The rights of the donor are very limited. These children are the vulnerable people at the time of the treatment. In other words, they are not consulted. Other people are making decisions on their behalf. All adoption legislation and all family law legislation in the Western world says that when there's a conflict of interest, the rights and needs of the children shall be paramount. It's on that basis that the children's rights have a higher responsibility than the donor. Now, what is interesting is that the arguments that have been put forward about the supply issue have been found to be invalid. Research that I found in 6 different countries now has found that donors are still prepared to donate even when they will be identified in the future. But there are different kinds of donors than the donors that are traditionally used. If in fact you are using young medical students, as appears to be the case, they may not be so keen to be identified in the future. If in fact you are using married men who have had their family, then for them, secrecy does not seem to be an issue in the same kind of way. So it has something to do with the recruitment, who is being recruited; and secondly, the policies of the clinic in terms of how they could tell this to the donor.

Doering: I don't agree that the donor has rights to know the offspring. But there seems to be some counter arguments to the right to know about their genetic set-up. Do you think there are some limits to ask for a duty to know on the part of the offspring?

Daniels: I do not think there are any limits. That's a very interesting point and thanks for raising it. But the comment that I would make to relate to this is "What happens to secrets in families?" and the power of secrets. Can you really keep a secret in the family? There are many people who try to keep secrets, but we actually talked to the offspring as adults who have never been told, until, perhaps, the father dies. Suddenly this information is passed on to them. They always say, I always knew there was something different. I always felt there was something different. They knew that people were keeping some secret; but the children knew in some intuitive way, that there was something there. So I think there is a duty of parents to share information at the earliest possible stage. Many parents in the research say that they tell the children when they become adolescents. Adolescence is the worst time from a psychological point of view to be telling people that they were conceived with the assistance of donated semen.

Yang: The next paper is by Wenmay Rei and Jiunn-Rong Yeh. Are there any questions?

Bagheri: I wonder if you could clarify more your participatory model for making decisions. For example, if the problem is too sensitive for the public, will the ethics committee refer to a decision making system like a referendum? @

Rei: Eventually, I think, all public policy should be authorized through the passage of legislation. The ethics committee itself can not make a decision that is legally binding. In contrast, a referendum, can serve as one vehicle to create legally binding decisions. I don't think there is a conflict between having an ethics committee, which helps the society to deliberate on moral issues and then having a referendum for people to decide on these issues. However, I would like to raise the difficulties of debating about biopolicies because of the technical and highly moralistic issues involved. Voting itself without discussion is hard to bring people to deliberately debate on these issues. If we are to hold a referendum on a bioethical issue, we have to fortify this by helping the people to understand the technical information and the also all the different interests involved. In doing so, people don't just vote yes or no. I think this could clarify the complications behind bioethical issues.

Bagheri: Do you think it is possible in practice?

Rei: I doubt it. But I think it depends on the situation in different societies. I think there are more possibilities if the society is more homogenous in terms of ethics and religion. It would also depend on the level of literacy. But I seldom see fundamental health issues included in referendum. I do doubt whether it is a good vehicle to enhance moral persuasion behind these issues.

Anstey: I enjoyed your talk but I was troubled with your arguments about democratic legitimacy for national ethics committees are very much arguments for the legitimacy of representative democracy in general .It seems that you are advocating a more participatory or democratic democracy. Are you comfortable with that?

Rei: No, I'm not. I want to clarify that I don't want to bypass or substitute the ordinary politics of representative democracy. I think that's the cornerstone of every democratic society. And unless there is a prevailing interest or a strong reason behind why we should replace the model of representative democracy; I don't think we should. The role that the national ethics committees will play is to serve as a mechanism for thinking out loud before the legislation considers and votes upon an issue. I think national ethics committees may be able to do this better than legislative bodies since not only are there fewer members but there are a bigger chance of them being more diverse compared to legislative bodies that are created through electoral processes that may be biased against minorities. However, ethics committee can make recommendations but these are not legally binding. It is still up to the legislature and the general public who have to decide on the issue. The ethics committee can only be legitimate if it has gone through a diverse and well-balanced deliberation.

Yoon: I have two questions. You mentioned that out of the 17 members of the National Ethics Committee of Taiwan, 5 are lay people. I would like to know more about the composition of those 5 people. And what do you mean by "lay"? Does " lay" mean not being a physician or a biotechnologist? My second question is I heard that the Taiwanese government has just recently started funding ELSI problems at a national level, and that you are part of that ELSI research team. I wonder what is the relationship between the ELSI team and the bioethics community in general in Taiwan. Is there any relationship to the National Bioethics Committee?

Rei: Of the five people, one is a philosopher who is also a coordinator of the ELSI team. That gives some overlap and communication. The second person is a professor of sociology. The third is a social worker at the hospital. The fourth is a district attorney. And the fifth is a bioethicist at a medical school. They are lay in the sense that they do not have medical training. But they are certainly not ordinary people; they represent various disciplines in the bioethical debate. About the second question, I gave my viewpoint in my power point presentation. But I think there's a lot to be improved in terms of the organization and also the transparency of the decision making process. In terms of the substance of their rulings, so far there are five rulings. These include a ruling against a case of reproduction, which was made. The lack of explanation of the ruling to the public made it difficult for most people to understand it however. The second case was for traditional issues of medical ethics, like for physicians to solicit patients by providing buses to patients to commute them to the hospital. The committee said they should not do this. It has played a role that should have been played by the medical society. Another one is on national health care insurance.

Doering: I would like to put your talk into a broader perspective. How should policy makers be informed in the discussion? Germany is interesting because we have a national bioethics committee as well as a study commission to Parliament. The high level debate in society was not due to these bodies however, but due to media representation inside society. There was a different level that was not in your paper, that is the public discourse. We had a chief editor of one of the leading German newspapers who took a leadership role in the two year long high level media debate, in all major newspapers and magazines. This provided a culture for decision making in changing the public and policy makers. People's ideas changed. The outcome is still a law, but the process is worth noting. Denmark is another country, and they did not have the high level media leadership. Media plays a very important role.

Rei: I think that's an issue that I would like to answer later in private.

Yi: Thank you, we must move on to our last speaker, Dr. Dua from India. Are there any questions?

Bagheri: You mentioned some ethical dilemmas from the Bhagavad Gita, so I wondered what is the difference between doing good and being good? What is the distinction between good and bad?

Dua: Yes, this situation may be difficult to apply. I give you an example from the Bhagavad Gita that Lord Krishna said, of a philosopher who talked about assisted death. He said that if something is not possible then you should make a way to do it.

Yi: If there are no more questions, let's have a 20 minute break.

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