The
Ramazzini Institute
for Occupational and Environmental Health Research
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The
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Who
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Book Review
Bernard Gert An International Ethical Framework for Unraveling the Genome? Bernard Gert, a distinguished Professor of Moral and Intellectual Philosophy at Dartmouth College, has written a useful framework for those bedeviled and confused by the seemingly intractable ethical issues of the human genome exploration. In plain English - devoid of the usual convoluted language that would-be philosophers use to cover their inabilities - and from a sharp mind that has been fruitfully immersed in ELSI issues for a decade, Gert has devised an ethic applicable in the multicultural intellectual souks of the massive human genome exploration. His latest book, Common Morality: Deciding What to Do, is published by Oxford University Press.Even on the calendar of major scientific investigations, the unraveling of the human genome, an international project with participant institutions drawn from a global cross-section of human society, is not a recent effort. A half century ago, based on at least a century of research in North America and Europe by hundreds of other scientists, in November 1952, James Watson printed “DNA ® RNA ® protein” on a small piece of paper taped on the wall above his writing table in his rooms at Clare College,[i] leading to his Nobel prize [with Francis Crick] for the discovery of the double-helix structure of DNA. From the beginning, Watson and other investigators in what has become a massive scientific and multinational commercial endeavor warned and worked for resolution of associated “ELSI” or ethical, legal and social issues. There has been progress. It cannot be said that the ELSI research programs in the United States or elsewhere ‘discovered’ any new principle or practice, the application of which ends justified fears of privacy invasion, discrimination, stigma and social disruption. While [hopefully] ‘facts’ are used, public policy research is not an empirical science [if it is a science at all]. It is a dialectic process of uncovery, not discovery, and heuristic application. Nonetheless, what has developed over the decade of the ELSI programs are significantly better-educated researchers and practitioners, greater awareness among populations susceptible to the effects of the abuse of the evolving technologies, and a fresh body of accessible literature It is true, as the publishers suggest, that moral problems do not always come in the form of great social controversies, but more often in the context of smaller decisions. Nevertheless, it is nice to know that when we enter the thicket of genetic variation mapping and pharmacogenetics, the natural progeny of the human genome project may not be subject to abuse if we follow some simple rules. Unquestionably, Gert asserts, an ethical quandary may remain. The Common Morality, it appears, is not always apparent in our differences on national policies for regulating stem cell research, genetic tests, research subject protection, and associated issues. Yet it is always useful to understand what it is that we do indeed share. One such persistent quandary is seen in a basic procedure in human research subject protection and worker medical surveillance: the soliciting of supposedly voluntary supposedly informed consent. According to Common Morality, the solicitor as well as the ‘subject’ or patient must be moral agents, i.e., as Gert asserts, rational persons who 1] understand moral prohibitions and requirements, and 2] can act on their understanding, and thus - except in special circumstances – are fully responsible for their actions. One such moral prohibition is “do not deceive” [Gert’s rule #6]. Incomplete or even complete information given to a person who does not have full power of choice, in fact or perceived, over his/her actions, results in a person who is not a moral agent. A signature on an ‘informed consent’ form by a person who is not a moral agent is not consent, and its submission as evidence of consent is a deception. Intended or unintended, solicitation of consent by those who, for example, have economic power or promise over a thus coerced research subject or worker-patient is a routine practice in the workplace. Thus, this deception is routine! There is little controversy about rule #6. But many make a case for routine deception on the basis of the ‘special circumstances’ exception, e.g. some alleged over riding need of society, e.g. an alleged need for a test of special genetic susceptibility to an occupational disease. Judging the morality of these exceptions is the nub of the rub! Gert’s rules of Common Morality do not pretend to give us a unique answer to every moral question. But the unanswered questions are not beyond the judgement of our moral ideals, which in regard to ‘over riding social needs’ boil down to what we believe is a good society or the direction human development should take. Sheldon W. Samuels [i] See in GEE! archives our review of: Watson, JD. A Passion for DNA: Genes, Genomes, and Society. Cold Spring Harbor Press: Cold Spring Harbor 2001.
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