The commentary probably alienated a few people, as I called for a greater percentage of the Human Genome Project grants to be given to ELSI issues, like other countries. The situation of debate may have improved, which is welcome, but the amount of funding allocated from those grant programs to ELSI issues has stayed rather small. Meanwhile there have been more grants for research on bioethical issues awarded in general, from my experience. There as also been more dialogue. The objectionable phrase in the commentary was actually when I said most people in Japan do not trust doctors - something which I am afraid has remained true and is probably recognized more by doctors now after the recent revelations of the conspiracy of an attempted cover-up on the HIV contaminated blood issue. However I should say since people in Japan have the right to chose any doctor they like, they can chose a doctor that they trust most (though, because the name of the doctor is written on their health insurance card which they must take for medical visits to be covered by government insurance, if they seek a second opinion the doctors can see all the clinics visited in the past year or few - as long as the card is not renewed!).
The response that doctors make to the low level of social trust in them (as also seen in the International Bioethics Survey), can either be to ignore it and deny it, or to try to find methods to improve the trust. I think the goal of bioethicists is not to focus on the first response, but rather to help doctors accomplish the second response, namely to develop a trusting relationship with their patients. Surely this is also the most satisfying for both sides.
The first paper in this issue is by Atsushi Asai describing the status of informed consent in Japan as a doctor who spent some time in the USA, and there are commentaries by Long, Morioka and Leavitt. The general view taken is that informed consent is a rather new concept and Japan is lagging behind the USA, and is individualism of informed consent preferable to paternalism. It is not a myth that there is less informed consent in Japan than in the USA, however, it is a myth that informed consent is a new concept unseen before gifted upon the world from the patient rights movement of the USA in the 1960s.
Coincidentally this week saw a newspaper story mentioning the idea of informed consent expressed by Dr Fuwa Ishin Noriaki (died 1860) and his son Dr Fuwa Ishin Koreharu (1829-1889) in the 19th century in Japan, Asahi Shimbun (16 June), 31. The father was a student of Dr Hanaoka Seishu, who incidentally was the first doctor in the world to use general anesthetic successfully, for a breast cancer operation in 1804 (his wife and mother argued about who should be the first subject as both wanted to be first!). In 73 pictures with associated text that were left concerning breast cancer cases from the father, and in the 64 from the son, at least in 5 cases with severe conditions the text records a very detailed explanation of the disease and prognosis that was given to the patient. The text in one case included the severe case with the warning that even if removed the cancer will come back and the patient was recommended not to have the surgery, but the patient demanded it. Analysis of the documents by Prof. Yamauchi Kazunobu from Nagoya University Medical School, and a writer Mon Reiko, revealed that these texts include informed consent consistent with the latest JMA requirements. This was presented at the Japan History of Medicine Conference in Sapporo on 21 June, 1996.
While I agree all have the right to decide what happens to their life, is individualism in Japanese young people to be applauded as a sign of progress? Unfortunately unless individualism also has responsibility and love for others, it has a danger of becoming only selfishness. Tolerance may even be indifference, and harmony only the result of social indifference. I am afraid for any country that pursues the apparently green grass of others, only to find it has lost the roots of its own and that it cannot consume the roots of the other - it is like the house with no foundation - a universal proverb, as is the green grass proverb!
Truth-telling is also not so new. In Japan we also see a long tradition of controlling our own death, whether it be the practice of lover's suicide (shinjuu), or the tale of the 46 samurai who killed themselves after enacting revenge for their leader's murder, in 1703. Although we find the story commonly called the "47 samurai", old age even caused problems for samurai, so only 46 of the 47 were fit enough to enact revenge! However, the most learned and respected samurai do not use artificial means to cause death. They use natural death, as seen in the case of Yamaoka Tesshu, the most influential swordsman of the 19th century Japan. He was a Zen samurai who predicted the time of his own death, and controlled his own respiration naturally to die. This could be the ultimate in informed choice of death! We could see the living will as a natural extension of Japanese tradition, and a long awaited return of the samurai tradition which was discouraged since the Second World War. I do not, however, mean that Japan or America should be a land of Zen samurai, but rather that we can find the tradition of informed choice in the long history of Japan. In this concept truth-telling should be more common!
Another myth of Japan stems from the brain death debate. Because there is a debate, and no law allowing organ transplants from brain dead donors, people think Japanese people don't like new technology, and may be behind the West. Actually, it may be quite the opposite - the fact that the issues of brain death were quickly buried in social and legal discussions in most Western countries, and people did not question it (rather they accepted or rejected it, privately), and that in Japan the media and public have made a lengthy and labourious discussion of it, should make us question which type of society actually involves public views more in decision-making about acceptance of new concepts. People in Japan are trying to reach a social consensus - which is a admirable goal, and one sign of bioethical maturity. Unfortunately, the fact that one will probably never find a consensus on many of these questions, but work out public policy that makes peace between two views, means public policy still needs some development in Japan - as anywhere.
I therefore dismiss the myth that bioethics is new, from the West, and Asia must copy what is done in the West rather than being the "far east". It is a dangerous view, and those who promote it should look at the social consequences that they may cause - the old principle of balancing doing good with do no harm! Japan often looks to the West, and other cultures, and copies the good things it sees, something which is positive. We all need some discretion, and analysis, and to allow people choice.
The second major paper in this issue is a very supportive essay of genetic engineering by James Hughes. This reminds me of another comment I had from a Japanese geneticist, on a letter I wrote in Nature called "No to genethics", which was arguing against the idea that the problems raised by genetics are special and we need a new ethics. Actually he thought the title was "No to genetics", which has quite a different meaning! The views expressed in Hughes essay criticize many critics of genetic engineering, and I hope for a response from some in future issues. It is not so easy to dismiss the social and ethical concerns that people have, but bioethics is not only negative - rather we need to learn how to progress society with technology, while also knowing when we should, and when we should not.
Assisted reproduction is a past example of a technique many were (and some still are) afraid of, and thought it should not be applied to change human reproduction. Agneta Sutton contrasts the variety of three official Christian views on the subject within the UK, and it is hoped future issues of EJAIB will include responses from different religions and points of view. The results of an opinion survey conducted by H. Kaiya, in the paper I wrote with him, provide data on the attitudes of members of the Japan Muscular Dystrophy Association to genetic testing. The families are most positive, but so are the patients, providing an important addition to the groups within Japan that have been surveyed, and raising questions about whose views should be taken - those who are personally involved most with the technology as users, those who provide, those who pay, or those of other groups concerned about society. It is not a failing of a country if it decides by lack of legislation that the use of a technology should be defined by the providers or users, however, it is one task of bioethics to examine how a technology may be best used within a community over a long term view.
This issue contains a lot of food for thought, what seem like diverse papers actually follow up on a theme, and have some overlapping relationships. Let us hope that we have further thoughtful commentaries in future issues...and that more readers take the opportunity to enter into dialogue with others.
P.S. Our June in the Middle East
During the month of June we spent a few weeks in Israel, via France, meeting old friends and greeting new ones. A full report on the very successful time will be made in a following issue. The bioethics workshops in Ben Gurion University of the Negev (BGU), included myself, Frank Leavitt and Jayapaul Azariah, who both will also be coming to Japan in October. The 3 year project to develop an Asian Bioethics Network had a good start, and we would like to seek others to join. One role is as experts that people can contact, and in this regard I would like to assume on the support of all those in the Bioethics and Genetics Network, a current version of which is on the Internet.
There were many memorable times and informative meetings with colleagues who I cannot mention here on all sides of the changing political and varied religious scene. Perhaps the highlight of the trip was a one day workshop on bioethics at Shiva Hospital in Gaza, organized by Dr M. Afifi of the Ministry of Health in Gaza, which was the fruition of much work he and Dr F.Leavitt of BGU had put in. Numerous other people helped arrange the meeting, and 50-60 active participants enjoyed and learnt from each other.
- Darryl Macer