pp. 263-265 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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Discussion on Ethics and Medical Genetics
Fujiki: Thank you Dr. Tamai, for an interesting presentation. We still have some time for discussion now, and also we will continue discussing this problem, especially on familial cancer testing, further in the Fukui Satellite Symposium. We clinical doctors are paying great attention to the problems Dr. Tamai discussed.
Shapiro: Thank you for your presentation, and it was very interesting to hear about the representation of non-medical people on the committee that draw up those guidelines. I wanted to observe that in our experience in the UK, we found this to be a very important but first step, because one needs to generalize the discussion from then to draw the public into these debates. We have found it very useful to have a highly developed network of genetic disorder support groups, that enable the point of view of people suffering from the disorders, and their families, to be put forward on matters like this. How far has that started to happen in Japan?
Tamai: Thank you for your very valuable comment. We had representation from patient groups during the hearings, but it was not sufficient. In Japan when these kind of guidelines are drawn up it is very rare for non-medical personnel or staff to take place in these committees. Hearing the opinions of that group is still very under-developed in Japan. Such groups are not used to presenting their opinions to doctors also, so communication is still at the very fundamental and undeveloped level, but I would like to continue to develop and expand this in the future.
Fujiki: In the WHO-assisted Satellite Symposium Dr. Tamai's husband will also talk, and he will talk on the Down Syndrome Support Group. It is very important to listen to the patients and general public, on these topics. The Japanese Society of Human Genetics has also had some discussions and Prof. Matsuda will be presenting on this. It is important to listen to these voices, and also the WHO Working Group has also called for these people. Public education is also important, and Dr. Tamai has been involved in these efforts also.
Wertz: I would like to thank Dr. Tamai for an excellent presentation, and I wanted to add that the American Society for Human Genetics (ASHG) has just announced a new Points to Consider Document about telling family members about genetic risks, even against a patient's wishes. The ASHG has decided that in cases where there is a high risk of serious of genetic harm, that geneticists may override confidentiality to tell family members about their risks, but only in cases where the disorder is either preventable or treatable if treatment begins early. They would not disclose untreatable or preventable disorders.
Matsuda: I would like to ask Dr. Wertz, what time is appropriate to do predictive genetic tests.
Wertz: The ASHG also has a Points to Consider Document about testing children for adult onset disorders, and they argue, as does the UK Clinical Genetics Society, that it is best to postpone presymptomatic testing until adulthood and let the child decide, as an adult, whether or not to have testing. In the USA, most adults decided not to have testing, even for breast cancer genes.
Fujiki: Thank you very much, we must move to the next speaker, Prof. Neizel. Thank you, we can have discussion.
Leavitt: Thank you for an informative paper with speculations about the very near future, 2000, is very close. Since we are speculating about the future I want to ask a question which we discussed in Tsukuba. Today most people think of prenatal genetic testing in terms of making a decision for or against abortion. We have been promised other uses, e.g. fetal gene therapy or advanced treatment of the neonate upon birth. How much of this is real? How much use of prenatal testing is not related to abortion decisions? How much can we expected in 5-10 years.
Neizel: Our experience is that if you have a therapy, then in most cases the parents will accept the therapy. If there is a therapy after birth they accept the risk and do not do prenatal diagnosis, but immediately after birth do postnatal diagnosis. We have some experience with families with retinoblastoma. It is an eye tumour which develops in the first 4-5 years. Before the availability of the test many carriers decided to abort the fetus, even though you could say it was not so severe. After the test become possible, we still have quite a few couples who refuse prenatal tests but will do postnatal testing, because then you can start therapy immediately. They screen the retina in first 5 years, and then laser therapy after that. Another experience is from hemophilia A is that we do not have many prenatal diagnostic cases, because this can be treated rather easily. In all the genetic disorders where we can offer therapy we will not lower the number of couples who decide for selective abortion after diagnosis. On the other hand, if there is a severe genetic disease, many couples at high risk, will opt for selective abortion if there is no therapy.
Shapiro: Could I point out that where treatment is available, we may still have eugenic pressure to abort. One example is hemophilia, in the UK it is estimated that it costs 40,000 pounds a year for satisfactory treatment so there is a danger that there is financial pressure to persuade people to abort affected fetuses.
Neizel: I think this is important too. There is pressure from the family, and society in some cases, to abort fetuses. There are also financial situations in Germany, where there is a good system of public health care, which means the costs of treatment are from the public. Even though there is a system there may be a more subtle pressure on the parents to abort. Therefore I am also thankful for your mentioning the patient support groups. In Germany these are growing very fast, and we have very good relationships even though this was not true in the past. It is very important to make sure such subtle pressure is not put on the couple, and the system of public health care is maintained where the costs for the treatment are covered by insurance.
Fujiki: Thank you, the next paper is Prof. McGee. Thank you very much, we can have a question.
Macer: I would like to make a short comment. One of the central issues you raised in an excellent discussion is the issue of control. We can remember the book by Joseph Fletcher, Ethics of Genetic Control. I wonder whether it will be parents who have more control, or will it be the society, or governments? Who will really control? Will parents chose freely in the future, or will they just be controlled by the expectations of society?
McGee: Two brief answers to this good question. Questions about freedom for parents, whoever the parent unit is, are set in a larger context against other technologies. As I indicated there are pressures on parents now to think of having inalienable rights to reproductive choice and in thinking of themselves as pressured to have a child that is healthy. Second, these pressures are existence in ordinary technology that is already used. I want to argue that as we move in the future we should not use genetic exceptionalism, which is treating genetic tests as if they are fundamentally different from other diagnostic tests and therapeutic methods available to parents. There is a real tendency to say that we should not absolutely pressure parents about genetic tests, but it is acceptable to pressure them about PKU and nutrition. I think it is odd, and untenable distinction.
Matsuda: Thank you very much, I am afraid we have to move to the next speaker. The next speaker is Dr. Aksoy. We can have one or two comments.
Leavitt: I understood you to say, that if a couple have a doubt about the genetic diseases that they are passing onto the offspring, then rather then getting pregnant in the old fashioned way and having testing during pregnancy, you are suggesting that they undergo in vitro fertilization and preimplantation diagnosis. I think there are two problems you did not emphasize enough. Firstly the unpleasantness to the mother from the hormone treatment needed for IVF. Perhaps technology will change this, but for the present it is not easy. The second point may be very unpopular, but I have not found that there are sufficient long-term studies of children born through IVF, in time and width. What happens in 10, 30, 50 years time? These experiments may be very expensive, but if they are not carried out it may be one of the largest uncontrolled clinical trials in history. I would be very happy to be corrected.
Shapiro: The latest study has been issued by the UK Human Fertilization and Embryology Authority last week raises very serious questions about the long-term effects.
Wertz: In addition to the two last speakers, I have heard a number of males in the past few months suggesting that preimplantation diagnosis is going to be the wave of the future, and the answer to the abortion problem. But so far men seem to say this, and some would say it is a male plot to control reproduction. It begins to sound like we can always do it better than women can, and personally I do not think that preimplantation diagnosis is the answer to many problems. It helps people if they do not perceive it as abortion, but as you pointed out, many people see it as the moral equivalent of abortion.
Matsuda: I am sorry we must move to the next speaker, Dr. Malhotra. I think we should discuss this material in your country, India. We have to move to the last speaker, Prof. Fujiki. We can have one comment.
Fluss: Thank you for a very enlightening and comprehensive presentation. CIOMS has actually not taken any position on human cloning. Two other organizations, the World Medical Association which deliberated on this in Paris in May, 1997; and FIGO; and the Denver Summit of the Eight, have also made statements on cloning.
Matsuda: Thank you very much, we must close this session.
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