Discussion for Session 7pp. 141-143 in Bioethics and the Impact of Human Genome Research in the 21st Century

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Editors: Norio Fujiki, Masakatu Sudo, and Darryl R. J. Macer
Eubios Ethics Institute

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Takaku: I will present the first paper. Are there any questions?

Verma: I want one clarification from the Japanese societies. You say you can do prenatal diagnosis only for maternal condition. The way that Dr. Vogel said in Germany, the mother is very anxious because of the fetal abnormality. In that situation, can you do prenatal diagnosis?

Takaku: Yes, I think so.

Kneller: On the issue of counseling, if my understanding is correct, genetic testing is not covered by insurance. For example, testing for predisposition to future disease, is that covered by insurance?

Takaku: I think it's not covered. Diagnosis of Huntington's disease, if the patient has no symptoms, then diagnosis is not covered by insurance. But if the patient has the symptoms already, then the diagnosis is covered by governmental insurance.

Kneller: In the non-symptomatic case, the counseling is not covered either, however it is embodied in your guidelines saying people should have counseling.

Takaku: We have always been asking the government, especially the Ministry of Health and Welfare to cover the costs of counseling by governmental insurance. But it is not yet covered. Not so far in the future, it may be covered because the government report or guidelines are encouraging counseling. This is contradictory where the government committee is encouraging counseling. However the Ministry of Health and Welfare is divided into many sections and each section could be independent.

Leavitt: I wanted to comment about abortion of fetus with anomalies for maternal reasons, as also raised by Dr. Verma. Exactly the same is the case in Jewish law in Israel. The ancient Jewish source of the Mishah recognizes abortion only for the sake of the mother. Consequently those Orthodox rabbis today, who will allow abortion because of fetal anomalies, will justify it on the basis of saving the mother's stress of having to deal with the baby.

Takaku: That seems the same as Japan. I would like to move to the next speaker, Dr. Williams from the USA. Are there any questions for discussion?

Leavitt: One thing in your paper troubled me. When you spoke about the tree in Kenya, and you spoke about the intellectual property rights of indigenous people. Some of us at this conference today were at the conference a few years ago in Ahmedabad in India, which was devoted to this subject. Grass roots innovations, intellectual property rights, the use of indigenous plants, and the rights of the local people etc. The organizer of the conference Professor Anil Gupta brought local peasant farmers to the conference, who mostly just sat there very politely. While we were discussing about this thing, someone thought we should ask the farmer what he thought. He said, "It is OK. I have all I need. If you want to make a lot of money out of our things, I have no objection. We have all we need. Go ahead and share everything." I'm wondering whether insisting in a language by using the word "should", the indigenous people should be involved in the planning and the profits and so on, of the exploitation of some of their ideas or of indigenous plants, is not one kind of imperialism. Because what you are saying is that they should be integrated into the global profit oriented, greedy money world. That is imperalism itself.

Williams: Part of the overarching theme of my dialogue here today was that, everybody should listen and be open to learn. Maybe I am learning right now. Perhaps the word "invited", they should be invited rather than incorporated would have been more appropriate. Thank you.

Becker: You said not many people would oppose the call for a sustainable future. I think that's false. I'm sad to believe that is false. Because you and I, and lots of ethicists, have been calling for a sustainable future for at least a decade or two now. The USA is a tragic example of the country not to imitate, that everybody is trying to imitate. They don't follow CO2 protocols, they won't listen to European requests on GM labeling. There is a tremendous economic drive to do exactly what will be unsustainable. I think you did well by putting this genetic and bioethical issue into the global context as you framed it. We need to do more of that. I don't expect an immediate answer, but you've pointed to a critical question and that is, how to persuade people. Self sacrifice is important for future generations, and not to burn all our gasoline now, not to burn all our genetic possibilities now, and save it for a couple of generations along the road. Do you have any thoughts on that?

Williams: I do. I agree with you and am some times embarrassed by my country. We are the worst in adopting international treaties designed for international and global sustainability. The reason in my experience that people are not functioning in a way that is aimed at sustainability is not that people don't want to create a sustainable future. I think it's more that they are unaware, or it hasn't been something that's been presented in a way that they can identify with. There is a problem with a lot of bioethical conversations, or conversations in general, that you get extremes and emotion, passion, and not a lot of results. This was part of the motivation behind my call for consensus building. Maybe you get some fiery conversations and nice quotes, but in fact you cannot change unless you can reach out to convince people who are actually making decisions about these kinds of things. The best way that I have found, and there are many approaches to persuasion, is in the way that I have suggested. In my experience is through calm dialogue. Starting out focusing on your shared conceptions, and then moving toward the point you want to make. Because I don't think that people are averse to the idea of a sustainable future, I just don't think that they have cognitively come to grips with how or what they are doing affects a sustainable future.

Wertz: I think we give people contradictory information. Most people in the US I think believe that technology is going to solve our problems. That we are going to be able to drive monster cars that get 10 miles per gallon, which seems to be what people want to drive, and at the same time we are going to find new sources of energy for our children's children, because technology is so great. Someone mentioned a word "Genohype" this morning, it is a wonderful word. One thing the talk about the Human Genome Project has done is to tell us that we are going to live to be 130 years old in good health. Francis Collins said this at the HUGO meeting in April 2000. That in about 40 years people are going to be able to live that long with discoveries of genetic technology. While people are hearing this, if we can solve this problem, why cannot we solve energy problems, why do we have to be self-sacrificing? The more you tell people about how great technology is, the more they are going to think, "this will be solved, I don't have to worry about it. Nature is going to be improved". You have quoted Native American sources about harmony with nature. The Europeans who came to America did not believe this. They believed that nature was faulty, that the Indians were the devil, that nature had to be improved, and we are going to improve nature with God's help, and we've been improving nature ever since. We don't really believe in the healing power of nature left alone. That's one reason why talk about self-sacrifice for sustainable future, for the most part, falls on deaf ears.

Takaku: The last paper in this session is by Dr. Shimizu, from Japan, who is also a vice president of HUGO. Are there any questions?

Vogel: Certain parts of the DNA seem to be there simply for retaining the structure of the chromosomes. In the microscopic structure of the chromosomes there are certain sequences, for example the TA sequences, to facilitate the bending of the chromosomes to form the metaphase chromosome. Did you find such sequences and can you identify the sequences that are necessary for bending the chromosome in metaphase.

Shimizu: Yes there are a number of studies on the chromosomal DNA, which is like a long string like molecule. Yet, if you make close examination, there is a unique sequence to bend DNA. That may be the structural signal for another type of gene regulation. I want to emphasize the coding sequence is only 5%, and 95% is something else. That sequence contains all kinds of regulatory information, like the ATAT sequences.

Kneller: When people such as you complete the analysis or the sequencing of the chromosome such as 21 or 22, I assume what you have done is to have mapped the genes. In what percent of the cases are the sequencers themselves are able to determine, or get a rough idea about the function of the protein coded by the genes. In other words, how difficult is it to go from mapping genes to protein function determination. Is it technically difficult or is it more of a matter of time?

Shimizu: Finding genes from a DNA sequence is by using a computer using some kind of algorithm.

Kneller: If you could answer both for that, but also for the stage that you achieved, say chromosome 22. Because when you published the article in Nature, you did not know the function of many of the genes?

Shimizu: Yes, those numbers were 545 and 225, in total 770 genes, for about 30-40% we know what the gene product does. But for most of them we just identified the gene. But some of the so-called genes may not really be genes, or maybe we are missing many more genes in the remaining sequence. The completion of rough draft sequence was announced in June 2000. We are one of the groups, but in my opinion, it was forced by different powers.

Kneller: If your lab were to take an average of, let's say 10 genes of chromosome 22 whose function we don't know, how long would your lab take to find out its function, just for example?

Shimizu: To determine the physiological function of each of those gene products takes maybe years and years. Particularly if any of those gene products are related to disease, then that will need even more effort and intelligence.

Takaku: Thank you for the comments, we will move to the final summarizing discussion without a break.

Please send comments to Email < asianbioethics@yahoo.co.nz >.

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