pp. 268-269 in Intractable Neurological Disorders, Human Genome Research and Society. Proceedings of the Third International Bioethics Seminar in Fukui, 19-21 November, 1993.

Editors: Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1994, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Discussion of Plenary lecture

Chairperson: Shiro Miwa
Director, Okinaka Memorial Institute for Medical Research, Tokyo, JAPAN

Miwa: It is a privilege for me to chair Prof. Milunsky's plenary lecture entitled "Ethical and legal lessons and the new genetics". Thank you very much for your very nice and informative lecture. We have about ten minutes for discussion, any comments?

Clarke: In Britain we've not yet had major problems with commercial DNA laboratories, but I think the nearest parallel would be maternal serum screening for Down's Syndrome, where there has been quite unethical promotion of an insufficiently validated test, and a clear offering of the test by the laboratory without any counseling or support provision. So there is separation of the test and the counseling because of the commercialisation of it. That has given us quite a few problems.

Milunsky: It turns out that the die is cast in the United Kingdom, because the government has moved to reflect commercialisation as it occurs in the United States, so no longer is there the pure National Health Service, but institutions with hundreds of years of tradition now find themselves required to earn a living. As a consequence in the UK at hospitals like Guy's Hospital, and famous institutions, find that their genetics departments are expected to generate revenue. This commercialisation will simply mimic the problems we have already seen in the United States.

Cook-Deegan: I wanted just to draw you out, I was trying to figure out which point you were making. I think there are two possible points about the DNA banking of many varieties, testing and banking and all sorts of things. Are you impugning the profit motive per se, and if so, whether that would be different from the commercial banking of money as opposed to genes. All that is in the commercial sector, but it has a heavy layer of regulations, that is the other point that you could make. Do you think that there should be a lot of laws to protect privacy, and assume that its going to be in the commercial sector, or are you saying that it shouldn't be in the commercial sector at all. If so, what is the alternative?

Milunsky: I am dedicated to the proposition of capitalism. I find that despite, like what Winston Churchill said about democracy, it is about the worst system that you could imagine, but show me a better one. It is the same for capitalism. The problem is, I believe, that human genetics with all its complexities should not be practised in an industrial setting, and that commercial companies are not the appropriate place to practise medicine, regardless of regulations. One only have to spend a few years, let alone the three decades I've spent, in contact with patients with genetic diseases, to recognise that the involvement of a commercial company is not beneficial to the patients general good. I believe that industrial companies have ample opportunity to make billions of dollars through the manufacturing and industrial process, but not in the diagnostic process, where it is necessary to talk to both patient and doctor in a closely related fashion. Commercial companies in genetics can manufacture diagnostic kits, for example, or develop the machinery, or all of the hardware or software that goes to support this entire technology but not to practice medicine. Regardless of the evolution of any rules or regulations, which is the position I am trying to posit.

Miwa: Any other questions?

Lo: People have been talking about patenting information from the genome project. There are pros and cons. What is your attitude to patenting genetic information?

Milunsky: I think it is an abomination to think that one can patent segments of the human genome, and I believe that ultimately the United States Patent Office, and others elsewhere in the world, will move in the same direction against this kind of patenting process. Ultimately it might also be simply irrelevant because of the tremendous advances being made, far in advance of predictions, so it may simply become a non-issue, or mute point.

Takebe: As for the patent issue, the joint chairs of the HUGO Ethics Committee, Nancy Wexler and Victor McKusick, are proposing to have a joint session to discuss that issue next year. I have one question, you mentioned about the relative lack of medical genetics at medical universities or colleges, but how about training for counselors. I understand that most university hospitals should have a medical genetics department with counselors, is this satisfactory or still not good enough?

Milunsky: I am not sure who you are referring to as counselors, but in the United States there are two dimensions to this question. First, individual physicians or Ph.D.'s can become Board Certified in Medical Genetics for Ph.D.'s, or in Clinical Genetics for M.D.'s. They provide both diagnostic and counseling services and are to be found in virtually all major teaching hospitals throughout the United States today. There is a second level of individuals with Master's Degrees in counseling, whose original aim was to provide liaison and support counseling for patients under the direct oversight of the trained physicians in clinical genetics. We are now beginning to see repetitive examples, some exposed by litigation, where counselors with a Master's degree are actually practicing medicine, in the genetic counseling context. This was certainly not the original aim of this evolution, but they do perform a valuable service. We just have to go back twenty years, or so, to the papers of James Sorenson where all the appropriate questions and attitudinal surveys were done, and published about twenty years ago, to discover that after genetic counseling about half the patients came away with about as much information as they had before. In other words about half don't benefit, and you never know which half. And the genetic counseling individuals with a Master's degree are quite valuable in that context, of providing additional support, reiterating the message, or being able to answer the questions that still remain problematic. Unfortunately physicians the world over still resort to jargon, to technical language, when talking to patients, and so leave patients completely lost. Especially in the genetics background where they don't have a science background to comprehend the subject even in its simplest way.

Leavitt: With respect to what you said about capitalism, I thought that it should be pointed out, there's a movement in a lot of countries including my own country, Israel, to try to imitate what they think of as the American model, free market capitalistic medicine. However, I spent some time going through old issues of the Journal of the American Medical Association. Some time ago, in the 1950s, any interference of the government with medicine was considered as something like Stalin, Mao, or Marxism, and was highly opposed by the American Medical Association. Today American doctors and associations are much more willing to accept more government regulation of medicine, a certain amount of government subsidy with regard to poor and old people. Your own views too, for example, you seem to oppose corporations doing medicine, this certainly is not capitalism in the old unregulated sense of the term. I think that what we are really going to see in the future is an attempt to take the best from both socialism and capitalism, in other words to find the middle ground that will allow the freedom which capitalism allows, together with the regulation, provision, and attempt to subsidise care for the poor, which is found in socialist medicine. A mixed system rather than either one or the other.

Milunsky: I am happy to hear that you have a sense of optimism, certainly if you speak to physicians in the United States they are not willingly lying down and having the government promulgate all kinds of laws and regulations that will affect their practices. They have taken so long that they have lost their own personal powers in this subject, and are now going to be dictated to, about how care will be managed in the United States. That does not mean they have willing gone down this route, but they have been taken there, and deservedly so.

Miwa: We thank you again Prof. Milunsky, the morning session is closed.

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