Genomica e medicina sostenibile : Intervista al Presidente dello Hastings Center, Thomas Murray

Genomics and sustainable medicine : Interview with President of The Hastings Center, Thomas Murray [21 May 2005]

( 20 Maggio 2005 )

( scritto da Redazione FGB )

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Thomas H. Murray è attualmente Presidente dello Hastings Center, ed è stato Direttore del Center for Biomedical Ethics alla Facoltà di Medicina presso la Case Western Reserve University (Cleveland, Ohio), nonché Presidente della American Society for Bioethics and Humanities. E' tra i fondatori della rivista Medical Humanities Review, e siede nel comitato redazionale di The Hastings Center Report; Human Gene Therapy; Politics and the Life Sciences; Cloning, Science, and Policy; Medscape General Medicine; Teaching Ethics; the Journal of Law, Medicine & Ethics. Tra i suoi libri più recenti The Worth of a Child, e Healthcare Ethics and Human Values, con Bill Fulford e Donna Dickenson, The Cultures of Caregiving: Conflict and Common Ground among Families, Health Professionals and Policy Makers, con Carol Levine. Ha curato con Maxwell J. Mehlman la Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology, (John Wiley & Sons, 2000). Attualmente appartiene ai seguenti comitati: Ethics Committee of HUGO, the Human Genome Organization NIH Blue Ribbon Panel on Conflict of Interest Center for Strategic & International Studies' Council on Biotechnology Research, Innovation and Public Policy Advisory Committee for the Genomics Institute at the Wadsworth Center Affiliated Scholar of the Institute for Bioethics, Health Policy and Law at the University of Louisville U.S. Food and Drug Administration's Biological Response Modifiers Advisory Committee Board of Directors of Physicians and Lawyers for National Drug Policy Chair, Ethical Issues Review Panel, World Anti-Doping Agency. I dettagli del lavoro di Thomas Murray e degli attuali progetti dello Hastings Centre nel campo della genetica e genomica sono consultabili sul sito www.thehastingscenter.org

Thomas H. Murray Biographical details (on The Hastings Center Web Site) Some other links: [21 May 2005] 2001. The Human Genome Odyssey Conference University of Akron, April 5-7, 2001 (Murray was one of the Speakers) The Human Genome Organisation (HUGO) (Murray is a member of the HUGO Ethics Committee) Privacy and Security Working Group of "Connecting for Health" Connecting for Health is a public-private collaborative designed to address the barriers to development of an interconnected health information infrastructure. Connecting for Health was established by the Markle Foundation and receives additional funding and support from the Robert Wood Johnson Foundation. (Murray chaired the group) Gustavus Adolphus College's 38th Nobel Conference, titled "The Nature of Nurture" October 1-2 2002 «The past 30 years of research in behavioral genetics, cognition, and neuroscience have begun to clarify how life experiences contribute to individual development relative to biological makeup ...» Seven noted experts in the field have accepted the College's invitation to participate in the 2002 conference: Murray was one of them.

Cristina Grasseni - Maybe we could start by outlining, which are the themes in your research that relate to the problem of responsibility in innovation?

Thomas Murray - I began to investigate the topic of responsibility very early on. I was able to show that philosophically speaking we can attach many different meanings to responsibility, i.e. physical responsibility, causal responsibility, or moral responsibility. "This person is responsible for this accident" can be taken to mean different things. This was my own introduction to philosophy.

Piero Bassetti - The question is also, responsible to whom, and for what? Now that God is not anymore a point of reference for everybody, this raises the problem of where to find a referee...

Murray - ...And what is the standard. It's an old idea, but for many of the questions we try to answer at the Hastings Centre the criterion is some notion of a world in which human flourishing is possible. We want to make decisions based on whether in fact they create the kind of world, human, material, legal, that enables human flourishing and fulfillment - the creation of mutually fulfilling relationships as with children and parents; a life in which physical health is important but also capable of love. A lot of my own writing is about family and I think the fact that I was raised by an Italian-American mother has influenced my research.

Grasseni - Would you like to sum up the main topics of your research and how they relate to the issue of innovation?

Murray - I don't think I can give a fully satisfactory answer to these challenging questions in a few words, I came to recognise that I do research in few topics, all connected with the impact of innovation in health medicine and the life sciences, and also with our social and moral responses to innovation and how they affect our ability to live a fully human life, one that should lead us to live a life of fulfilment and creativity. This connects organ transplantation to genetics and the genome project to parents-children relationships and reproductive technologies.

Grasseni -  How would you explain your own take to these research topics?

Murray - I always think about the ethical implications, but ethics is not just abstract philosophy. Rather the impact on the life of people and the contents of ethics are very broad and I am very interested in social arrangements, including politics and policy. For me it all intertwines.

Grasseni - We discussed the issue of sustainable medicine with Callahan. Are there any obvious connections between this topic and the idea of genomic knowledge?

Murray - This working conference at the Rockefeller Foundation is about the impact of genetics and the genome project on public health, and whether we can look at more efficient ways to promote health rather than to work with the most expensive medical technologies, but working instead at the more local public health level. I am very interested in the concept of sustainable medicine.

Bassetti - Do you think that genomics will favour the achievement of sustainable medicine?

Murray - That is the question. It will do some of both. It may be possible to more rapidly develop more effective immunisations. If we can rapidly study the genome of a new infectious organism and then work at strategies of immunisation, the possibilities are beyond my capacity to fully comprehend. The other end of the scale is to personalise genomic medicine and to do it in a way that would be enormously costly. Doctors will tell you that for any one drug roughly one third of the patients find it effective, for one third it does little, for one third it hurts. If there was a way of knowing in advance in which group you fall it would be possible to avoid spending a lot of money on something that does not work for you. If we could work it out like that it would be a saving.

Bassetti - Do you refer to humankind or to the Americans? How do you think we'll be able to face the generalisation of such problems?

Murray - The divide is between all of those who are relatively wealthy and those who are not.

Bassetti - Do you think we can go on assuming a split or that we shall be forced by the rationality of medicine itself to take the whole of mankind into consideration? The effects of a genetic change for instance cannot be controlled once introduced.

Murray - This conference will explore the impact of genomics on the developing world. Sadly most of the effects of genetic and genomic technologies will not spill over rapidly from one world to another. For instance take gene therapy: we still can't do it reliably. Right now I am on our Food and Drug administration panel that reviews all gene therapy and cell stem therapy and I have a fairly good grasp on how good the technology is right now. It's probably on the threshold of a breakthrough but it may take quite a while to provide results that are predictable and reliable. Our knowledge base has been growing for 20 years but we are still at the threshold.

Grasseni - Genomic knowledge to me looks like an example of knowledge that creates new situations that were unthinkable of. I am thinking of privacy and disclosure and informed consent, of the bio-banks that have been set up or are about to be...

Murray - There is too much to say about that. The scientists are driving for the creation of bio-banks. Utah has an amazing bio-bank already because of the Mormons noting down their genealogies very precisely, and this information has been entered in a database. Researchers have been taking tissue samples from the families with their consent. You can have very broad but also very deep and rich bio-banks that are good for answering different questions. If you have a very rich pedigree for each generation, with information about what happened to each of them and tissue samples, you can ask questions about complex diseases. The diseases that are simple to define in genetic terms are very rare, like Huntingdon disease. But diabetes and the autoimmune diseases or cancer, which affect statistically large sectors of the population, are the most complex. Cancer is now understood as a genetic disease but not necessarily inherited. It may take up to 7 mutations to develop before one gets cancer, you may be born with 2 of them but you need to develop the others in your lifetime to get cancer. Even the famous breast cancer gene only accounts for about 2 per cent of the people struck by breast cancer.

Grasseni - Can you relate all this to the idea of a risk society, as explained by sociologist Ulrich Beck for instance?

Murray - I chaired the US genome project task force on genetic information and insurance. We created a report in 1993 that was submitted to our government. And like most reports it was well received and then ignored. I can send you articles that I have written about that and one that was very controversial when I published it, based on my work on insurance. I maintain that it is a mistake to think of genetic information as completely different from all other kinds of information - the concept of genetic exceptionalism. And in fact it has some dangerous implications, it leads people to fear genetic information more that it should and also not to be concerned about other types of information that they should be worried about. People think they have been protected in all other cases and they have not. The insurance industry wrote most of those state laws.

Bassetti - When we discuss public opinion, mythology is relevant. There is a myth that some conditions can be radically different from other diseases, such as sexually tramsitted diseases. But I think you have already been too generous with your time, thank you very much for the conversation.