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The Book of LifeReview - The Book of Life
A Personal and Ethical Guide to Race, Normality, and the Implications of the Human Genome Project
by Barbara Katz Rothman
Beacon Press, 2001
Review by Frances Gillespie
Jun 30th 2001 (Volume 5, Issue 26)

The first thing that struck me when reading this book was the unconscious irony of it. For Barbara Katz Rothman communicates with passion, elegance and erudition the thinking and accomplishments of the modern geneticist and her grave doubts about the narrowness of its base without once querying the limits of her own discipline, sociology.

'Genetics isn't just a science' (we are told) 'Genetics is the single best explanation, the most comprehensive theory since God' (p13) and 'the gene is the icon of our time' (p14).

Thus, from the beginning the lines are very firmly drawn: this is not an objective analysis but an exposition of the limitations of genetics from a social science perspective.

'The sociological tradition in which I am grounded has taught me to see mind, knowledge, understanding as social phenomena....mind is just a refraction, a prism through which one sees the mind, the social consciousness, the social world,' (p17-18) It is therefore no wonder she views genetics with alarm: 'Genetics - a way of thinking, an ideology as much as a science - (that) puts all of its energy, majesty and power, into the nucleus of a cell.' (p15) The question is, of course, how valid is her perspective.

The difficulty in assessing this is precisely the gap (almost abyss here) between the two bodies of knowledge. For genetics concentrates by scientific method on the structure of human DNA and its consequences, on molecules and the nuclei of cells, and the structure of the human genome, and lays claim to the discovery of the building blocks of life. At its deterministic extremes it is claimed that we are only that which our genes make us.

Sociology, as shown by the quote above, not only does not focus on the individual but places the human being as completely connected to and influenced by the society in which he lives. Research is usually qualitative, a method frowned on by the pure scientist who conveniently ignores the nature of the data.

The question here becomes:

'Is research into human genetics fundamentally a social, political and ethical concern, with some technological obstacles? Or is it fundamentally a technological concern, with some social, political and ethical obstacles' (p35) The confusion surrounding the factual possibilities offered by genetic analysis is shown to be part of the hype engendered by the vastness of this new frontier. The fact is that the genes that have now been identified as carrying certain diseases usually only point to a probability of having such disease, and the probabilities are all different.

The vexed question of selective pregnancy is examined at length. Again, genetic testing can tell if there is an abnormality, but it cannot measure its degree - mongolism for example exists from mild to severe. And even then, do you consider just the physical consequences to the child? What about stigma? What about the effects on the family? These are sociological questions.

And so we come to the designer baby. Genetics offers the possibility of controlling the future, of playing God.

'We're being asked to think about what kinds of children we want to bring into the world....We're asked to look at the bits of ourselves, and choose which...to keep which to discard in the generations that follow. And I stand here, on the brink of this future and know there are no maps. There is only imagination.' (p41) Another sincere concern examined by the author is the effect of genetic research on the perception of race. The geneticist, with his focus firmly on the microscopic is unaware of the interpretations that my be put on his work, and anyway he does not perceive it to be his responsibility. He finds that 'There is too much genetic variation within populations, and too little between them for "race" to be possible.' (p92) and expects to be believed.

But race is another powerful social construct: it is no good telling me my genes are very similar to a New Guinean for it denies the differences I see. It is natural to wonder whether the study of groups of genomes, patterns of genetic distributions can reveal how humanity shifted over the millions of years of its evolution. This is one of the aims of the Human Genome Diversity Project.

Katz Rothman is skeptical of the Project's value, for she perceives racial prejudice as insoluble by genetics (p94) and on the same page sees it as perhaps furthering its cause. The project is seen as 'not a map, but a sequence or transliteration of the human genome. (p95) Finally, only our sameness can be mapped, not our differences. What is left is a 'generic person' (p95)

So we will return to looking for the genomes of identifiable racial groups, because that is the social context in which the science of genetics is placed. Empirically, it has no social context, or perhaps I should say the geneticist perceives himself without social context and thus happily leaves its bioethical consequences to someone else to unravel and solve. Often, unfortunately, the research proceeds the ethical discussion as the geneticist often is blind to his work's negative possibilities.

The discussion "Writing the Body: the Genetics of Illness" (p111-172) is a fascinating journey into both the association of genes and illness and also gene therapy. It is revealed that, as with the difference between predictability and certainty of the effects of single genes, genetics only influenced breast cancer in 7% of cases. (p151) Even when the genetic marker for a disease was there, as in the instance of identical twins, the actual course of the disease cannot be predicted. The author points out that race, culture and politics effected the development of screening programs very differently for Tay-sachs and sickle-cell sufferers. (p119)

Gene therapy is seen as 'genetic practice' and 'above all a way of imagining the future' (p173) This is the only area for which the author shows some approval although she cannot resist mentioning its two thousand failures so far.

This is a well researched and entertaining book on a controversial subject. I enjoyed reading it although it perhaps lost a little in its subjectivity.

© 2001 Frances Gillespie

Fran Gillespie writes about herself:

I am a mental health consumer of forty years standing. My family is steeped in this experience as we have traced it through four generations I therefore have also a personal understanding of caring in this difficult area. In the last five years I have moved from hiding under the blankets to giving evidence to an enquiry into the human rights of the mentally ill in Australia to spearheading an understanding of the mental health consumer as a resource in our community in Hobart, Tasmania. With the support of likeminded people a system of paid consumer consultants arose from this activism. I am at present on leave from studying for a research Masters in Medicine that centres on an analysis of the development of mental health consumerism in Tasmania. I believe that it is necessary to set aside anger generated from personal experience in this area in order to achieve lasting solutions. Thus I also work as a consumer advocate.

Note that this book was previously released as Genetic Maps and Human Imaginations in 1998.


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