The Book of Life: A Personal and Ethical Guide to Race, Normality and the Human Gene Study

The Book of Life: A Personal and Ethical Guide to Race, Normality and the Human Gene Study

by Barbara Katz Rothman


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"This is an exciting book. Its plea that genetic theory be integrated into social thought-rather than the other way around-is wonderfully lucid and well informed. A pleasure to read." --Vivian Gornick, author of The End of the Novel of Love

Product Details

ISBN-13: 9780807004517
Publisher: Beacon Press
Publication date: 04/19/2001
Pages: 276
Product dimensions: 5.60(w) x 8.25(h) x 0.53(d)

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Since I finished the first edition of this book, they've done just what they promised: they've "mapped the human genome." And maybe, just maybe, the limits of that accomplishment—what it will and what it won't mean for us human sharers of that genome—are starting to become clear. It feels to me, in one of my rare hopeful moments, that maybe we're just about cresting this hill of unbounded enthusiasm for all things genetic. We're still hearing lots of promises—of longer lives, individually tailored medicines, unlocking the secrets of cancer and all that—but now we're hearing as much and maybe even more about patents and profits, what will be earned as much as what will be learned from the human genome.

    I came home from my office today to work on this preface with three articles. One was on the "discourse of DNA," a cultural studies approach to genetics that a student passed on to me. The other two were from the Chronicle of Higher Education. One was an article by Paul Ehrlich on "the tangled skeins of nature and nurture in human evolution," and the other was the lead article from that same issue, "For Sale: The Book of Life," on how academics and entrepreneurs are entering the "brave new business world of the human genome." And that about sums it up, doesn't it? DNA is a cultural icon, a part of public discourse, woven into the way we now think. DNA is less and less informative of who and what we really are as the unthinkable complexity of gene-to-gene and gene-to-environment interaction is seen. And DNA is absolutely and positively bigbusiness.

    As reports on genetics move from the science pages to the financial pages of the newspaper, people rightly get skeptical. The heavy ethical concerns we thought gene mapping were going to bring us were about tampering with destiny, playing God. Today's ethical questions in genetics are more about playing the market.

    So it's a little easier for me to introduce this critical look at what's being called "genomics" than it was for the first edition. There's a bit more skepticism and questioning out there on the human genome project, and I feel a bit less like a member of the lunatic fringe.

    It's not that I too don't have hope. Or the need for hope. Last week I sat in a surgeon's office with a friend, planning the removal of a possibly cancerous area of her breast. If cancer is, as we're increasingly learning to think of it, a matter of instructions gone haywire, I too want to have someone master the program. We sat there calmly talking, three middle-aged women, about how next month one of us is going to take a knife to the breast of another of us. I'd love to find a better way to do that—some form of bloodless reprogramming is very appealing.

    My friend, like more than nine out of ten women who are diagnosed with breast cancer, doesn't carry any gene for breast cancer; there's no family drama here, no great destiny she's playing out. We tend to think of genes as causes: from genes to body, from genotype to phenotype. But these genes in our body move with us through time and space, experience the environment we move through, and are marked by it. Changes take place in the genes of breast cells of women as we live in this world: genes aren't just causes, but also results.

    Genes are the stretches of DNA, found in every cell of our bodies, that code for the structure of proteins. Genes are not fate, destiny, or first causes. If genes are the "book of life," we have to realize that that book is constantly being written and rewritten by life itself.

    I wouldn't mind a bit of deliberate tinkering with the genes. I'm not religious, don't think God is a Master Programmer whose work shouldn't be touched. While I think we should be really, really cautious about rushing in to make any changes at all before we understand a lot more than we do now, ultimately I'm pretty sure that there are some genes that could be rewritten by human hands in the interests of better lives.

    But which genes are going to be rewritten? By whose hands? In whose interests? Think about those questions and the fact that genomics is a hot ticket in the financial world, and there surely is reason for concern.

    The "breast cancer gene," BRCAI has been patented. On May 5, 1998, patent number 5,747,282 was issued to "inventor" Mark H. Skolnick et al., and assigned to Myriad Genetics and the University of Utah Research Foundation. If anyone wants to use that stretch of DNA to research, test, or cure breast cancer—or for anything else—they're going to have to pay Myriad Genetics for the privilege. No wonder Myriad Genetics, and the companies like it, are generating Wall Street excitement.

    Since presumably Skolnick didn't "write" that gene, didn't create it, how did he get to claim to be its inventor? Patenting genes is a relatively recent phenomenon. Scientists have liked to think of themselves as discoverers, finding the world as it is, not inventors, creating a world of their imaginations. But patenting requires scientists to define themselves as inventors, now that the courts have decreed that once a specific gene sequence is taken out of a person and identified, it can be patented.

    Patenting was designed to give individuals ownership of the fruits of their labors: an inventor or holder (the assignee) of a patent has exclusive rights to that invention. During the period of a patent, usually seventeen to twenty years, the inventor can sell the patent, or license it for a fee or for a royalty. Patenting makes genetic research profitable. In the United States, Myriad Genetics charged two and a half times as much to screen for the two breast cancer genes, BRCA1 and 2, as it cost in the United Kingdom before the patenting of genes had been granted there.

    At a recent panel at the World Peace Forum, scientists and lawyers representing the interests of industries argued with me about how important it is to permit patenting. Without patents there would be no potential profit, and then, they argued, no investment. Why, after all, would anyone want to cure cancer? It has to be for the profit motive, the only imaginable reason anyone does anything. No patents, no profit; no profit, no incentive; no incentive, no cure.

    If it really is the case that we have organized our collective lives in such a way that if there is no profit to be made then there is no incentive to cure cancer, we are indeed morally bankrupt.

    Cancer cures won't be the only incentive genetic patents will offer. In the United States it may well prove to be even more profitable to cure baldness, cellulite, and potbellies. Are corporations likely to wait the decades, even generations it would take to be sure that we know what the full implications of tinkering with genes would be, if the profit to be had from curing baldness is right there?

    All in all, it is probably not a good idea to turn the book of life into a stock portfolio.

    To what other uses can we put this book of life? Some would have us use it as a history textbook, reading in the DNA the history of humanity. Unraveling this code, scientists can find the very small differences that distinguish our DNA from that of other primates. When and where and how did those differences come into being? Can we compare texts, read DNA across species, and learn our history?

    Sadly, but hardly surprisingly, some would use this book to read the differences among peoples, to search for race. Some are out there like the explorers of old, searching genomes for profitable nuggets just as explorers once searched new lands for gold and diamonds. Is the gene that would provide immunity to this or that dread disease to be found in some remote tribe? Can DNA be mined the way precious ores have been?

    Others are not out to make a profit but to maintain the status quo. Why are white folks richer and more powerful than people of color? Look to the genes! Within the last year a racist tract making just such a claim was mailed to all the members of my professional association. Sociologists all over America found themselves unwrapping a bit of racist propaganda. Nothing in that particular work, just like nothing in The Bell Curve, which had come out to much notoriety a few years before, actually made use of the new genetics, the science of DNA. But still it rides on the coattails, swept along by the power of the new genomics. A gene for this and a gene for that is announced every other day: why not genes for white supremacy?

    What I show in the first section of this book is that a true understanding of the new genetics, of how DNA works and what the genome is, undercuts the very notion of race, let alone racism. The science of genetics is not a racist science: but the ideology of genetic determinism, of a predetermined set of qualities passed from genotype to phenotype, from the DNA to the person, supports much that is racist in our society. That is, I'm afraid, a rather basic truth: in a racist world, anything and everything can be used to support racism, and will be. To the extent that our world still reflects racist systems of domination, the new genetics may be used a lot like the old genetics, to support a pseudoscience of eugenics.

    Moving inward from "macroeugenics" to the newer "microeugenics," I explore how the new genetics is changing our understanding of the body and of illness, offering a new set of metaphors for thinking about ourselves. The language of computers and informatics increasingly dominates the discussion of illness, especially but by no means exclusively cancer. While the data is quite clear that environmental issues and social inequality are the real cause of much illness and early death, we focus on individual genetic variation. And again, an ideology of predestination negates our awareness of the need for social change.

    In the third section of the book, I look at what has been the major use of genetic science to date: the strange new world of babymaking. The very first genetic information we got was that which came from simply counting chromosomes. The genes lay undeciphered along those chromosomes when prenatal testing first came along, raising all the issues that the newer genetics forces us to confront. An extra chromosome read like tea leaves in the bottom of the cup, foretelling and foreclosing the future. We've gone from simple screening, with only abortion offered as a solution, to an active marketing of "grade A" eggs and sperm. The book of life may be read as a history text by some, as a stock offering by others, but increasingly, for potential parents, it is being offered as a catalog: choose the genes you want, order the child of your dreams. Satisfaction, unfortunately, far from guaranteed.

    No one can give any guarantees for satisfaction in life, for getting—or giving—the kind of life you want. Because life, you don't need me to tell you, is too complicated to be spelled out in four letters. Understanding who you are, who I am, who our children are and who they can be, is not an exercise in decoding.

    And who am I? Who am I that I dare to write The Book of Life? Just like each of us, I'm a person in history, a person standing at a particular moment in time, living a life and trying to understand it.

    I'm a Jew who's just been to Germany again, to talk about prenatal testing and its possible eugenic consequences. The Germans are like children who've just touched a hot stove. Americans may talk cheerfully about how genomics is going to bring us medical revolutions, but Germans have a hard time using the language of genes and the language of politics in the same sentence without getting nervous.

    I'm a mother. Much of this book of life is life as a mother knows it, lessons from motherhood and from children. The son I gave birth to twenty-six years ago is gay. A "gay gene" would get me off the hook, loved ones have reassured me. It can't be my fault if it's "genetic." Fault? Is my son's sexuality an error that needs explaining, blame, forgiveness? Why a search for a gay gene? Are genes gay? Or are people? Or, actually, are people gay, or is gay just one of the ways of thinking about categorizing entire people based on parts of themselves? Ah, the complexities.

    I'm a white woman who's learned to function as a black mama: my youngest child, mine by adoption, is African American. What I thought I understood about the way race is structured in America has been put to the test these past eleven years. There's a lot to be said for "identity politics," for acknowledging that people learn from actual experience in life. I'm not black—sometimes it surprises me when I look in a mirror and see I'm just as white as ever—but I'm a stakeholder in the black community in a way I was not before.

    I'm still the child whose daddy died of cancer; and the woman whose stepfather did the same. I have all the cancer fears of anyone in this society and then some: I know all the warning signs and see warnings where there are no signs at all.

    I'm a sociologist, trained and educated to avoid reductionism in all things. Social systems aren't just the people who make them up: they have rules and characteristics of their own, things you can't understand by looking only at individuals. Trees stand still, I remind my introductory sociology students: trees are very geographically stable life-forms. A tree will be just where you left it. Forests move. Looked at over time, forests move across the face of a continent. Each tree lives or dies just where it is, and the whole moves. A whole is not just the sum of its parts. A person is not just the sum of his or her genes.

    Like you, like everybody, I'm very complicated, filled with contradictions, stories, memory, and history. I'm more than my DNA, more than a collection of proteins. And I'm bothered, worried, saddened, sometimes frightened by a metaphor for personhood that sees us as just "information." My concerns, and yours, about the new genetics are not just some ethical obstacles to be overcome so that they can go ahead and cure cancer and all that. What we're concerned about here is not just how much of who and what we are is predetermined in a set of codes for proteins. What is at issue is what it means to be a person, and how we can live our lives as individuals, as families, and as communities of people.

There is a certain satisfaction in finishing this preface on the eve of Rosh Hashanah, the Jewish New Year. It's not altogether coincidence: I kinda stretched the deadline a week to get here. It's not that I'm that much of a Jew (more on that later). But I talk some in this book about bread baking as a different kind of metaphor for creation, and this is my annual challah baking day. The bread rises downstairs as I write up here, the smell of yeast still on my hands.

    Rosh Hashanah, according to the Jewish tradition, begins the ten "days of awe," the days in which the book of life is opened and next year's fates are inscribed. If the geneticists have indeed opened the book of life, these are still the days of awe. Our fate is not yet in that book, not in those genes, but in the way we choose to inscribe our future. We're still writing the book of life, each and every one of us.

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