The practice of informed consent under a patients’ rights law should be promoted before allowing organ transplants from brain-dead donors, a leading Canadian researcher of medical anthropology said.

“The idea of informed consent is not fully understood, and is certainly not practiced very much in Japan,” said Professor Margaret Lock of the Department of Social Studies of Medicine at McGill University in Montreal. “Removing organs should be done only when families of donors fully understand it and want it,” said Lock, who has visited this country nearly 10 times for research. Lock mentioned past cases in Japan in which the wishes of neither the donors nor their families were confirmed before the removal of organs from patients declared brain dead, including a transplant in 1968 at Sapporo Medical College and another in 1990 at Osaka University Hospital.

“Japan should have patients’ rights legislation. Informed consent is a part of relevant laws in North America,” she said in an interview. “I strongly believe that patients must participate actively in their own health by sharing information with doctors,” Lock said, adding that doctors should make efforts to use everyday language in discussing with patients their medical condition.

The professor said it may not be appropriate to say that Japan is behind the times, as often claimed by proponents of organ transplants, simply because medical circles have refrained from removing organs from brain-dead donors. “But on the other hand, Japan is ahead of the times in a sense” because the media have paid attention to the issue, bringing it into the minds of most Japanese, she said, adding that the North American public is not interested in the issue.

Lock said some senior neurologists in Canada have recently reopened questions related to brain death, and more and more people in the country are recognizing that “brain death is an arbitrary kind of definition created specifically for organ transplants.”

There is absolutely no treatment available for a brain-dead person,” she said. “However, research shows that a number of doctors and nurses think that a brain-dead person dies twice in a way.” The first death occurs with diagnosis of brain death, and the second is when the heart stops beating after the patient’s respirator is turned off in the operating theater, according to the professor. “I know some transplant doctors who have stopped conducting organ transplants because they feel uncomfortable about it. There is such an emotional reaction, which people do not talk about,” Lock said.

If the controversial bill is enacted to pave the way for organ transplants in Japan, establishing a system to distribute organs in a fair manner will also be indispensable, she said. “The most serious problem related to organ transplants is not something related to medical technology but about how to procure more organs. “Chronic organ shortage is a worsening problem in North America and Europe, where organ transplants have been conducted as usual treatment,” Lock said.

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