Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.
Shinryo N. Shinagawa,
Institute on Public Issues Relating to Health Care and Medicine, Hirosaki, JAPAN
The first one is concerning my own personal view of human genome research. I consider that efforts to map the human genome and to develop gene therapy may be called "acceptable", at least for the treatment of life-threatening and common hereditary diseases. Some say that we should not research this, but leave things to nature. In my mind, I also share some of this attitude. However, from the point of view of pregnant women, many would like to have prenatal diagnosis which can detect some abnormalities. Many parents in that case would like to have an abortion. In Japan, we have a Eugenic Protection Law of 1948 which permits abortions, however not for genetic reasons or abnormal fetuses. This situation complicates the issues. Whenever I am consulted by patients and colleagues I have a large dilemma in terms of ethics and logic. We physicians would like to prevent the effects of diseases, and wonder how we can eradicate the cause of sex-linked disorders. In order to overcome these problems, the only way is to progress the Human Genome Project. Even if it is very expensive it is much more meaningful than spending money on war, so I would like to promote this project.
Among the findings that will come, some will be positive benefits for human future while others will be negative. In the 1940's we were faced with the situation in using nuclear power. Now in medicine the problem of disclosure is very important and a fundamental idea. Many people should benefit from this research. But even in case of nuclear power, it is hard to differentiate between good science and bad science, between good genetic engineering and bad genetic engineering. The only direction we can take is to accumulate as much knowledge and wisdom as possible.
Let me proceed with the discussion on the personal views on therapeutic research. In current society we are enjoying good longevity. This is supported by good knowledge on hygiene and sanitation. Furthermore, therapeutic research has been accumulating. If such research is done with a positive public consensus, such research should be done. I am quite confident from the point of view of a research clinician. However, the way that universities are conducting research is not in this way. In most universities there is no clear ethical line. Even if ethical committees are established, as many hospitals and universities have, and they have guidelines, the way is not always clear. The voices of local communities are often neglected. We have to make more effort to listen to these voices, through the mass media. Furthermore we have to pay more attention to the appropriation of medical resources. There is a lack of economic priority setting.
From the viewpoint of clinical research, autonomy and informed consent is essential. I don't say a university can do what they like. Disclosure is necessary, and if they want to embark on a major research project they should listen to the voices and ideas inside the organisation and outside, and consider the appropriate allocation of resources they possess. If those conditions are met, then we can provide such institutions with some freedom. We should select the hospitals and universities who have such good conduct to receive research support.
On the dilemmas of in utero examinations I refer people to the paper by Prof. Suzumori. Some issues that are important. Even if a pregnant woman and her family want prenatal diagnosis it does not mean that we proceed with it. We need to debate the benefits and risks, in addition to using informed consent. All people should understand the issues. If an undesirable fetus is found we have a problem, so it may be necessary to have a discussion of this with the pregnant woman before she has the test. Therefore the medical doctor has to be very careful in notification and providing information to the woman. The hospital authorities should establish policies and guidelines which are not hidden.
An advisory council of multidisciplinary nature focusing on the bioethical problems of human genome analysis should be created, and we should not ignore the difficulties in clinical applications of the knowledge gained from human genome investigation.