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Genetic Information: Acquisition, Access, and Control
  1. Lenore Abramsky
  1. North Thames Perinatal Public Health Unit, Northwick Park Hospital, Harrow, Middlesex

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    Edited by Alison K Thompson and Ruth F Chadwick, New York, Kluwer Academic/Plenum Publishers, 1999, 348 pages, $115 (hc).

    News that the first draft of a map of the human genome had been completed was received with great excitement but fears persist about how this knowledge will be used. Such concerns were the basis for an international conference held in Preston, England in December 1997. The issues addressed were non-existent when many of those attending the conference were born, but they are among the most pressing ethical problems we face today. They are philosophically challenging, and the way we deal with them will have far reaching consequences for both individuals and society. The proceedings of the conference are now available in this book .

    Thirty authors, almost exclusively from Western Europe and North America, have written about the important issues of eugenics, insurance, the effects of market forces and the question of patents, public awareness of genetics and a variety of psychosocial and ethical concerns. Readers with a theoretical bent will find them dealt with more satisfactorily than will those more interested in applied medical ethics. This is the inevitable result of there being no contributors from the coal face such as genetic counsellors, medical doctors, actuaries, or “consumers”. So while I read with interest, I kept my cardigan on to ward off the chill of the ivory tower.

    A fundamental question examined was that of the extent to which genetic information is special compared with other health information. Holm argues (at some points more convincingly than at others) that it is not special since other health information can also be predictive of the future health of a person, of that person's offspring and of his/her other relatives, and that other health information can be as personal and sensitive as genetic information. He goes on to argue that a uniform regulation of all health-related information is better than a specific regulation of genetic information.

    The question of what to do about genetic information and health insurance is a crucial one which is dealt with at length. Insurance is essentially a form of betting. Is it “fair” if the insured person knows how the dice are loaded when the insurer does not? Is it “just” to punish someone with higher premiums or no insurance cover because that person has done badly in the genetic lottery? Is it acceptable for insurers to force genetic tests and unwanted knowledge on people? Lemmens argues that to the extent that insurance contracts are commodities, these questions should be subject to the rules of the market place, but in so far as they have a redistributive role, this should not be the case. He argues that necessities such as health care are not commodities and that public provision is required for health and welfare. Tangwa, the only contributor from Africa, says very succinctly that, “ … it does not seem morally right or even ordinarily fair to … reward or punish people on the basis of involuntary biodata”.

    This issue of the unfairness of the genetic lottery comes up again and again. Holtug argues that if people are disadvantaged (genetically or otherwise), we should compensate rather than punish them. He points out that this implies more than just health care and also looks at the question of where one draws the line between correction of a problem and enhancement. I wish that more contributors had considered this very delicate and complicated problem. Holtug goes on further to look at the question of responsibility and considers how responsible an individual is for failure in a career if it is due to: (a) lack of talent, (b) lack of effort, or (c) a decision not to pursue that career. He points out that any of these may be due to genetic endowment and/or environmental influences. It could be argued logically that whatever we do is, by definition, what we had to do, and it is puzzling that in our society we hold the individual responsible if the causes are thought to be environmental but not if they are thought to be genetic. Again, I wish more attention had been given to this problem.

    As one would expect in a multi-authored book, the style and accessibility vary enormously from one chapter to the next. Some I found extremely interesting while others failed to engage me at all. Overall, the book presents some important questions and explores philosophical ways of dealing with them. A journey through it leaves the reader better able to dissect the ethical issues in genetics today.

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