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Future Perfect: Confronting Decisions About Genetics

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Overview

Genetic technologies have moved off the pages of science fiction and into our everyday lives. Internists now offer genetic testing for cancers and early coronary disease. Obstetricians make genetic predictions during pregnancy about a baby´s future health. Even dentists are getting into the act, offering testing for a genetic propensity to peridontal disease. In this pathbreaking book, Lori Andrews provides the first detailed glimpse into how genetic testing can change your self-image, your relationships with loved ones, and your expectations about your children. She documents how ill prepared doctors are to deal with complex genetic issues. Andrews also uncovers the ways in which employers, insurers, schools, and courts have discriminated against people on the basis of their genetic make up. She traces the legal case history of genetics litigation and legislation and describes the ethical and social protections that need to be in place so that the Human Genome Project does not lead us directly toward Brave New World.In Future Perfect, Lori Andrews offers a new plan for making decisions as individuals and as a society based on emerging issues of ethics and science. Who should have access to your personal genetic information? Should genetic treatments be used to enhance characteristics such as intelligence in "normal" individuals? Should gene therapy be undertaken on embryos, changing their genetic inheritance, as well as that of future generations? If a woman learns she has a genetic mutation predisposing her to breast cancer, does she have a moral or even a legal duty to share that information with an estranged relative? Andrews considers the answer to these and many other questions that have profound implications for health care providers, medical organizations, social institutions, legislatures, courts, and ordinary people.
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Editorial Reviews

From Barnes & Noble
Law professor and international adviser on genetic and reproductive technology to the U.S. Congress, the World Health Organization, and the National Institutes of Health, among many others, Lori Andrews is one of the world's preeminent authorities on the legal issues arising with alarming rapidity in response to new biotechnologies. This scholarly but accessible book helps laypeople discover what their rights are on a number of pressing issues, such as genetic testing of unborn children, as well as exploring the emotional and social ramifications.
Publishers Weekly - Publisher's Weekly
With the recently announced mapping of the human genome, the era of genetics is upon us. But how will this new information affect our decisions regarding genetic testing and treatment, especially if, as Andrews maintains, our ability to diagnose genetic diseases has outstripped both our ability to treat them and our related social policy? A scholar of science and law and an advisor to the National Institutes of Health, Andrews (Body Bazaar) offers a dry but insightful glimpse of the future, by examining three discrete policy models to determine which may be best suited for genetic testing. Andrews maintains that, currently, such decisions are being made by the "medical model," which stresses individual patient decisions but leaves patients too poorly informed to make good decisions. The "public health model," which is based on widespread educational campaigns or legally mandated acts such as vaccinations, is also inappropriate, because genetic diseases are not necessarily a public health problem. Moreover, mandatory screening could leave those who test positive discriminated against by employers and insurers. Instead, Andrews advocates a "fundamental rights model" that would empower the patient and ensure the high quality of health care services by requiring informed consent. Our goal now, she argues, should be to secure "an informed and knowledgeable health care provider base." The author then goes on to consider specific problems in genetic policy (e.g., the impact of negative test results, or the impact of genetic testing on minorities) under this plan. With its rather technical emphasis on how genetics will influence society and impact an individual psychologically, the book's primary audience will be policy makers, industry experts, physicians and public health officials. (Apr.) Copyright 2001 Cahners Business Information.
Library Journal
Andrews (law, Chicago-Kent Coll. of Law; The Clone Age), a world-renowned expert on genetic and reproductive technology, provides a fascinating look here at genetic screening. Rather than concentrate on the extreme possibilities that are often touted by the media, she aptly illustrates the subtle and very frightening ways that genetic screening is already affecting society, particularly women, ethnic groups, and persons with disabilities. The author contends that U.S. policymakers have not satisfactorily addressed the issues surrounding genetic technology and suggests a framework that will help to develop adequate protection for individuals and specific groups in these sensitive areas. Her extensive notes will provide useful background information for researchers. Although there are numerous publications about this broad topic, Andrews's legal insight and her ability to look beyond the superficial issues provide a breath of fresh air. Highly recommended for academic, medical, and legal collections. Tina Neville, Univ. of South Florida at St. Petersburg Lib. Copyright 2001 Cahners Business Information.
Booknews
Competing frameworks for genetic policy and the impact of genetic services on private life and concepts of normality are among the daunting aspects of genetic screening discussed by Andrews (law, Chicago-Kent College of Law), an internationally-recognized expert on biotechnologies. She advocates a fundamental rights model, in contrast to the public health and medical models. Annotation c. Book News, Inc., Portland, OR (booknews.com)
Chicago Tribune

Andrews urges us to face the psychological havoc already being wrought us as, with a few probes into our DNA, a doctor can tell us what genetic diseases may lie in store for us, our families and our fetuses.

American Scientist

Compelling reading... very useful... intriguing.

Choice
Biotechnology expert Andrews clearly establishes that genetics will change all of our lives in the future — and this change may not necessarily be a positive one.... Useful to anyone who is now or will be involved in some aspect of genetic testing. All levels.

— R. G. McGee Jr.

Nature

Future Perfect is most interesting for its explicit focus on the need to find the most appropriate conceptual model for assessing the new genetics.... Very readable... based on wide knowledge.

America

This book is important for at least two reasons. First it explores the promises and challenges of the new genetics with comprehensive yet exceptionally readable commentary. Second, it sounds a clarion call to alert us to what Lori Andrews suggests is 'over-promising in genetics' and so to mobilize us in 'combating genetic hubris.'

The National Catholic Bioethics Quarterly
[Andrews'] unique work clearly makes the case for the need for further development in the project she has initiated with this book.

— Pia de Solenni

Choice - R.G. McGee Jr.
Biotechnology expert Andrews clearly establishes that genetics will change all of our lives in the future — and this change may not necessarily be a positive one.... Useful to anyone who is now or will be involved in some aspect of genetic testing. All levels.
The National Catholic Bioethics Quarterly - Pia de Solenni

[Andrews'] unique work clearly makes the case for the need for further development in the project she has initiated with this book.

Choice - R. G. McGee Jr.

Biotechnology expert Andrews clearly establishes that genetics will change all of our lives in the future -- and this change may not necessarily be a positive one.... Useful to anyone who is now or will be involved in some aspect of genetic testing. All levels.

Nature

Future Perfect is most interesting for its explicit focus on the need to find the most appropriate conceptual model for assessing the new genetics.... Very readable... based on wide knowledge.

America

This book is important for at least two reasons. First it explores the promises and challenges of the new genetics with comprehensive yet exceptionally readable commentary. Second, it sounds a clarion call to alert us to what Lori Andrews suggests is 'over-promising in genetics' and so to mobilize us in 'combating genetic hubris.'

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Product Details

  • ISBN-13: 9780231121620
  • Publisher: Columbia University Press
  • Publication date: 2/22/2001
  • Pages: 288
  • Product dimensions: 6.10 (w) x 9.00 (h) x 0.90 (d)

Meet the Author

Lori Andrews has been an adviser on genetic and reproductive technology to Congress, the World Health Organization, the National Institutes of Health, the Centers for Disease Control, the Department of Health and Human Services, the Institute of Medicine of the National Academy of Sciences, and several foreign nations including the emirate of Dubai and the French National Assembly. She is the author of nine books, including The Clone Age: Adventures in the New World of Reproductive Technology. A professor of law at Chicago-Kent College of Law, she is director of the Institute for Science, Law and Technology and Senior Scholar, Center for Clinical Medical Ethics at the University of Chicago.

Columbia University Press

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Read an Excerpt


Chapter One


Genetics Enters Our Lives


       On a crisp fall day in 1995, Francis Collins, head of the Human Genome Project at the National Institutes of Health, took the microphone at a press conference he had convened. He announced that he and colleagues at Hebrew University in Jerusalem and at the University of California, San Diego, had discovered a mutation in a breast cancer gene in Ashkenazi Jewish women—the 185delAG mutation—that put them at higher risk than other women for developing breast and ovarian cancer.

    The efforts to discover genetic causes for breast cancer preceding that announcement could be presented as a scientific adventure story, with all the intrigue and excitement that accompanies any new biomedical development. Long years of research, scientists competing to be the first to claim a discovery, and squabbles over credit have been part of the story of the enterprise of genetic science since long before James Watson, codiscoverer of the structure of DNA, first described them in The Double Helix.

    The breast cancer saga was no different. Since 1990, when Mary-Claire King first pinpointed the general location of a gene that, when mutated, appeared to predispose women to the disease, researchers had battled to find the elusive gene. When the first breast cancer gene was finally located, two biotechnology companies and the National Institutes of Health battled for scientific credit—and commercial patent rights that would ensure royalties each time a diagnostic test or treatment was undertaken withthat gene. Once those battles were over, other researchers vied to be the first to find particular mutations in the gene that caused a higher-than-average risk of cancer.

    Collins's announcement may have signaled the end of a scientific adventure story, but it was the beginning of a policy one, for each time a scientific quest ends in the genetics field, a policy quest begins. Health care providers, medical and scientific organizations, social institutions, legislatures, courts, and ordinary people seeking health care all struggle with the question of whether use of the new genetic technology should be encouraged or discouraged and what the social impact of that decision will be.

    The evolving technologies for genetic diagnosis, treatment, and research raise profound questions. What is the psychological impact on the person who learns through genetic testing that he or she is likely to develop a serious disease later in life? Which, if any, social institutions—public health officials, insurers, employers, schools, or families—should have access to such genetic information? Should genetic interventions be used to enhance characteristics such as height or intelligence in "normal" individuals and to track antisocial behavior in individuals with "errant" genes? Should gene therapy be undertaken on embryos, changing their genetic inheritance, as well as that of future generations? Should cloning research be done to learn how genes are turned on and off—and should entire individuals be cloned for the ultimate genetic study of the impact of nature versus nurture?

    The answers to those questions will determine not only the types of genes our future children will inherit but also the culture and values we will pass on to them. Genetic technologies could be applied in attempts to create "perfect" people. But moving in that direction entails such high psychological and social costs that the society we would be creating would be far from perfect.


    The Rapid Integration of Genetic Tests Into Clinical Practice


    Genetic discoveries are entering our lives at an astonishing pace. The day after Francis Collins's press conference, newspapers around the country reported the discovery of the 185delAG mutation as front page news. In response, numerous women called their doctors asking whether they should get tested. Biotechnology companies geared up to provide the test. At the time of Collins's press conference, he and the other researchers had identified only eight women in the study with the genetic mutation. All that was known was that these women had a glitch in their breast cancer gene. What the glitch meant was still a mystery. It was unknown, for example, whether women with this glitch would actually get breast cancer—or whether the genetic aberration was merely a variation of the normal gene. Much additional research was needed. But since the test for this unusual pattern in the gene is very easy for any lab to perform, it was offered to women before important fundamental questions about its meaning, usefulness, and desirability were answered.

    The women who sought 185delAG testing shortly after this announcement were told that if they had the mutation, they had an 87 percent chance of getting breast cancer. Some women whose test results indicated that they had the mutation decided to undergo "prophylactic" mastectomies and have their healthy breast removed to try to avoid the cancer. Later research found that far fewer women with the mutation—50 percent—would develop cancer than initially thought. Some women may have had their breasts removed unnecessarily.

    Bernadine Healy, the director of the National Institutes of Health when Francis Collins made his announcement, later criticized the rapid movement of genetic tests for breast cancer into clinical use. "The race to discover new genes was visible and competitive, the promise of substantial economic returns for screening tests compelling, and the public hunger for a breakthrough in breast-cancer treatment intense," noted Healy in 1997, after the new data were revealed suggesting that fewer women with the mutation would get cancer than previously thought. "It is too early to use BRCA [breast cancer] gene testing in everyday clinical practice, because it violates a common-sense rule of medicine: don't order a test if you lack the facts to know how to interpret the results." It is still unclear which breast cancer gene mutations will actually lead to breast cancer—and it is unclear whether women will actually benefit from genetic foreknowledge. Women who undergo prophylactic surgeries still run the risk of developing cancer in their remaining tissue. Additionally, being identified as having a genetic mutation may cause them to be stigmatized and subjected to discrimination.

    The saga of the breast cancer gene is repeated daily as new genes and their mutations are discovered. The much-touted Human Genome Project has led to an increase in the number of genetic services available. Initiated in 1990 by the U.S. Congress, this fifteen-year project is attempting to map (determine the location) and sequence (determine the chemical makeup) of all the 80,000-140,000 genes in the human body. This and related research activities have led to a torrent of reports in the scientific literature and the mass media about genes that predict an increased likelihood that an individual will have a particular disorder or characteristic. Barely a week goes by without a report of the sighting of a new gene, leaving both the public and the policymakers in a quandary over what to do with the new information.

    As with breast cancer testing, a similar quick transition from research to practice occurred when initial, limited research indicated that having one or two APOE 4 alleles of the apolipoprotein gene might indicate a genetic propensity, to Alzheimer's disease. The test is far from perfect. Many people with the APOE 4 allele will never develop Alzheimer's disease, and many people with the disease do not have that allele. Thus the test cannot predict whether an individual will get Alzheimer's. It can be used only as a diagnostic tool for those who already show signs of dementia. As with the breast cancer gene, numerous questions still need to be answered, including questions about how the test works in different racial groups, particularly since the genetic mutation that seems to increase the chance of Alzheimer's in whites does not have the same effect in African Americans. Though a wide variety of professional organizations have issued statements recommending that APOE testing not be offered to people outside of a research setting, when one East Coast researcher tried to recruit people to undergo genetic testing for a study, he had difficulty finding elderly people in New York City who had not been tested. In contravention of the recommendations, doctors had already begun testing their patients.

    Increasingly, people are tested for diseases that will not manifest until later in life, a practice that is creating a new class of individuals, referred to as the asymptomatic ill, who, to all appearances, seem healthy. For some diseases, having a genetic mutation means that the person will almost certainly develop the disease. But for others, genetic mutations only slightly increase the probability of falling ill. Such uncertainty makes it difficult for the person to determine how to incorporate this new information into his or her life.

    Prenatal genetic testing—to assess the health status of a fetus—has been around for nearly three decades, but even that is changing. Now such testing is possible not only for serious disorders but also for less serious disorders, diseases that are treatable after birth, for disorders that do not manifest until later in life, such as Huntington's disease and breast cancer, and even for conditions that are not medical problems, such as homosexuality. Already couples have sought genetic testing for Alzheimer's for their fetuses, intending to abort even though the child could have seventy or eighty years of a normal life before manifesting symptoms.

    The meaning of genetic tests varies widely. There are single-gene disorders for which environmental factors or other genes may increase or decrease the likelihood that the disease will actually express itself. In scientific terms, such mutations are said not to be fully penetrant—that is, not everyone with the genetic mutation will develop the disorder. Often the gene mutation indicates only a predisposition to a problem, and it takes an additional intervention, such as a particular environmental exposure, to trigger the condition.

    Even for disorders that are completely penetrant, it is impossible to predict how severe the disease might be or when it will strike. Even though the average age of onset for Huntington's disease is the forties, children as young as two have been symptomatic of the disease, while other people have not manifested symptoms until their late seventies. Similarly, some people with genetic mutations (such as certain people with the cystic fibrosis mutation) have such a mild manifestation of the disease (or even no symptoms whatsoever) that it seems odd to think of them as having a disease. Others with the same genetic profile have serious health problems.


    How Genetics Differs from Other Medical Realms


    Genetics shares many features with other medical fields, but several of its characteristics heighten concerns about its application. First, genetics often affects central aspects of our lives. Because genes are usually viewed as immutable and central to the determination of who a person is, information about genetic mutations may cause a person to change his or her self-perception and may also alter the way others treat that person. Second, there is a chance that people will get genetic testing or therapy without sufficient advance consideration of its potential effects. In most instances people seek medical services because they are already ill. But with predictive genetic testing, there may be an incentive for biomedical companies and physicians to market such tests heavily, and healthy people interested in learning whether they are at risk for later diseases may not consider the psychological, social, and financial impact of learning genetic information about themselves before they agree to genetic testing. As one group of cancer researchers observes with respect to genetic testing, "Society's technological capabilities have outpaced its understanding of the psychological consequences."

    There is also the problem of the therapeutic gap. Many diseases can be diagnosed through genetic testing, but few can be treated successfully. This has enormous social implications—your health insurer may drop you based on a genetic test result. But it also has potentially risky medical implications. While genetic treatment and preventive strategies for asymptomatic individuals are being developed, positive results on a genetic test may lead to interventions that are costly, unnecessary, ineffective, or even harmful.

    Genetics has another unique feature. Genetic testing of a particular individual reveals genetic risk information about his or her relatives as well. A parent and a child have half of their genes in common, as do siblings. Cousins share one-quarter of their genes, as do grandparents and grandchildren. Family bonds raise new and profound questions of "gen-etiquette," questions of the moral obligations that may emerge with the acquisition and disclosure of genetic information. If a woman learns she has a genetic mutation predisposing to breast cancer, does she have a moral or even a legal duty to share that information with an estranged cousin?

    In Ventura County, California, a woman convinced the local hospital to allow her to do paternity testing on a blood sample from her recently deceased father. The test suggested that the man she'd called daddy all her life was not her biological father, indicating that perhaps her mother had an affair. Now her mother is suing the hospital for invasion of privacy—and seeking to have more-sophisticated tests done on the sample to show that the first results were wrong.

    In the past, genetic testing has generally been used like other clinical testing—in situations in which the patient was symptomatic or the patient's family history, age, or ethnic background suggested a particular risk. Now genetic testing is being suggested for the population at large, to predict future diseases. The idea seems simple and seductive—look into your medical crystal ball, see your future diseases, and try to prevent them. The reality is much more complicated, however. For most complex disorders, genetic test results are ambiguous, and prevention and treatment strategies are uncertain as well. Some diseases, such as Huntington's, are currently incurable; for those who are afflicted, the future holds only certain debilitation and death. Learning the information may cause the person to give up on his future, or it may cause social institutions (professional schools, insurers, or employers) to give up on him.

    Genetic technologies are entering our lives in a variety of ways, with profound effects. Yet there are few places that we can turn for objective advice about the advantages and disadvantages of using a particular genetic service.


    Commercialism in Genetics


    Every day thousands of people face individual choices about genetics. At the same time, hundreds of policy decisions are made about genetics—such as whether a particular test should be offered, what information should be provided in advance of a test, and who should have access to the results. Doctors determine whether to test patients for a newly discovered genetic mutation. Health insurers analyze whether to reimburse for such a test. The Food and Drug Administration struggles with the question of whether university laboratories offering genetic tests should be regulated. State lawmakers debate whether an insurer should be able to deny an individual health insurance because his or her sibling or parent has a genetic disorder.

    Yet unlike any major medical dilemma we have faced in the past, we do not have a sufficient body of "neutral" scientists to advise us on these matters. A series of legal developments in the 1980s turned genetic science from a public interest activity into a commercial one. A landmark U.S. Supreme Court case in 1980 granted a patent on a life-form—bacteria—setting the stage for the patenting of human genes. Initially researchers assumed that people's genes were not patentable, since patent law covers "inventions" and prohibits patenting the "products of nature." But by the mid-1980s, the U.S. Patent and Trademark Office was granting an increasing number of patents for human genes, allowing the researcher who identifies a gene to earn royalties on any test or therapy created with that gene. A second radical change in the 1980s was a series of federal laws allowing university researchers and government researchers to reap the profits from their taxpayer-supported research. This development encouraged collaborations between researchers and biotechnology companies—and a growing interest in the economic value of genetic technologies.

    In the context of advances in biotechnology, the 1980s legislation led to important changes in the goals and practices of science and medicine. Leon Rosenberg, when he was dean of the Yale University School of Medicine, described the influence of the biotechnology revolution on scientific research: "It has moved us, literally or figuratively, from the class room to the board room and from the New England Journal to the Wall Street Journal." Thus, at the same time that genetic technologies are being increasingly marketed, fewer and fewer neutral geneticists are available to serve as advisers to society on the merits and impacts of these technologies.

    According to a 1992 study by Tufts University professor Sheldon Krimsky, in 34 percent of 789 biomedical papers published by university scientists in Massachusetts, at least one of the authors stood to make money from the results they were reporting. This was because they either held a patent or served as an officer or adviser of a biotech firm exploiting the research. None of the articles disclosed this financial interest, despite the fact that it could have biased the research.

    Biotechnology companies and physicians heavily market genetic services and products, and the supposedly neutral scientists developing them often share a cut of the profits as patent holders or board members of such companies. The commercial incentives mean that marketing is aggressive and tests are applied clinically within months of the discovery of a particular genetic mutation. Genetic testing is rapidly being deployed as a tool in a variety of medical fields. Neurologists test patients for Huntington's disease; gerontologists for Alzheimer's; and internists for genetic propensities to early coronary disease. Even dentists are getting into the act, offering testing for a genetic propensity to periodontal disease, to determine which patients should receive antibiotics. Genetics is touted as a way to revolutionize medicine. Its boosters predict an era of true preventive medicine, where genetic propensities for disease are identified and preventive strategies undertaken to forestall the manifestation of the disease.

    The commercialized environment makes it more likely that tests will be implemented prematurely, that they will be performed without appropriate concern for informed consent, and that the poor and disadvantaged will be the least likely to share in any benefits.

    Commercialization has pushed genetics into new settings. The genetics industry and the funeral industry have teamed up to market a kit that allows funeral directors to take some DNA from the deceased. It is promoted by the manufacturer, GeneLinks, as a way to obtain genetic information about the deceased for the aid of other relatives, but in truth the need for such an approach has decreased as direct gene testing has replaced the need for family linkage studies. Rather, the company is cashing in on the glamour of genetics, creating new psychological needs and then meeting them. Some families say they find it comforting to have a bit of their dead relative around in the form of his or her DNA in storage.

    While GeneLinks sends its samples to the University of North Texas for storage and potential analysis, another company, GENE*R*ATION LINKS, allows you to keep DNA of yourself and family members in your basement. GENE*R*ATION LINKS markets a kit with which you can collect hair, tissue from a cheek swab, and (with a doctor's help) blood and store it. "Our philosophy is that your genetic information should be under your control. The home/self-storage Kit is designed to maintain privacy," says the company's brochure.

    Even the Internet has become a site for genetic technologies. An Indiana doctor has a Website that allows people access to confidential, predispositional genetic testing for a variety of disorders, including breast cancer, Alzheimer's, and juvenile onset diabetes. In addition, researchers who want to get blood samples for genetic research can buy them via the Internet from tissue repositories. In most instances, the patients from whom the samples came have no idea that the blood they provided for hospital blood tests and the tissue they provided for biopsies have been turned into profitable cell lines. In an extraordinary breach of privacy, one company even put identifiable patients' medical records on the Internet without their knowledge and consent, which allowed tissue buyers to learn more about the patients who were the sources of the cell lines.


    Simplifying Genetic Tests


    Evolving, less-intrusive technologies for genetic testing make such tests simpler to do—which may give people the mistaken impression that the testing does not raise profound questions. A Q-tip can be used to swab the inside of the cheek to remove cells; this procedure may seem less threatening to some groups (such as children) than a blood test. A new prenatal technology, fetal cell sorting, provides information about the fetus without creating the physical risk to the fetus or the pregnant woman that is posed by amniocentesis or chorionic villi sampling (CVS). A blood test is performed on the woman, and complex procedures in the laboratory capture minute amounts of fetal blood cells that are circulating in the woman's blood. Prenatal diagnosis on those cells can determine whether, for example, the fetus has Down syndrome, cystic fibrosis (CF), or Tay-Sachs disease. Unlike amniocentesis and chorionic villi sampling, fetal cell sorting can be done surreptitiously. Blood is routinely drawn during pregnancy for a variety of legitimate purposes, and it would be simple to subject that blood to genetic testing without the woman's knowledge.

    With these less-intrusive testing technologies, genetic testing is being done without advance consideration of the impact. Moreover, simpler technologies make it easier for other social institutions, such as courts, insurers, and schools, to require testing—or even to undertake it without the target's knowledge or consent.

    Another technological development that is changing the nature of genetic testing is multiplex testing, in which numerous genetic tests can be performed on a single tissue sample. Microchips are being developed that can test a person's blood sample for 200-300 genetic mutations at once, and that capability will soon be expanded to 5,000-10,000 mutations. This means that people will be offered genetic testing for a greater range of disorders, and it is less likely that they will receive information in advance of the testing, since health care providers will not have time to explain each disorder. Consequently, people will be tested for many diseases about which they have little knowledge; the way the health care providers describe the disorder may have undue influence on whether people choose to undergo testing and whether, if the test is a prenatal one, they choose to abort based on the results.

    The dizzying assortment of available genetic services raises challenges for us as individuals and as members of a larger community. In the next few years, each of us will be faced with the question of whether to undergo genetic testing. In some instances, we may even find—as hundreds of people already have—that we have been tested without our knowledge or consent. Insurers, employers, or courts may be making decisions about us based on our genes.

    In a case involving termination of parental rights, a South Carolina court ordered a woman to undergo genetic testing for Huntington's disease. Insurers have denied coverage to currently healthy people because they have genes associated with a late-onset disorder. In Colorado and Georgia, a genetic testing program for a form of mental retardation called Fragile X is used in the grade schools. Since the genetic testing provides no additional information that could change how the children are handled, critics suggest that it will only serve to stigmatize the children.


    Exaggerated Faith in Genetics


    The drive toward testing is also spurred by an unquestioned belief in the predictive power of genetics. While scientists and doctors once thought microorganisms were responsible for all human ailments, they now blame genes. This assumption influences not only the type of research that gets funded but also the way disease and abnormality get categorized. The result, says McGill University professor of epidemiology and biostatistics Abby Lippman, is "a process of colonization with genetic technologies and approaches applied to areas not necessarily—or even apparently—genetic."

    This "geneticization," as Lippman calls it, is pervasive, though not necessarily beneficial. Gene therapies are often sought by researchers even when conventional therapies might be more appropriate and more readily attainable. Genetics is viewed as an appropriate way to guide everything from family dynamics to the legal system. While twenty years ago, childrearing manuals focused on telling parents to enhance their child's environment, modern guides tell parents there's little they can do—"it's all in the genes."

    There are few places to turn for guidance about the use of genetic technologies. Those who favor the technologies have made excessive promises of the benefit to mankind, including the potential for dazzling medical achievements. Calls for regulation of genetics have met with resistance and claims that any limitations on research would mean that therapeutic advances would be lost or curtailed. Even universally recognized standards for research—such as informed consent requirements—are seen in some quarters as unduly hampering genetic progress.

    Researchers convince patients that their salvation lies just around the corner, in the next genetic development. Within two weeks after Ian Wilmut and Keith Campbell announced that they had cloned a mammal—before any research had been done to show any therapeutic benefits resulting from human cloning technologies—a cancer patient was telling reporters that President Clinton's moratorium on federal funding for human cloning research was preventing him from getting the one treatment that could save his life. A lawyer was arguing that if couples were not allowed to clone their dead child, their fundamental right to make reproductive decisions would be violated.

    On the other hand, critics who remember the "war on cancer" and researchers' and politicians' promises that cancer would be cured by 1979 wonder why they should believe the current crop of zealous promises. They are even more skeptical of scientific claims now that medical research has become so commercialized, with government and university researchers discovering certain genes, patenting them, and then benefiting financially each time a gene test is performed. Other critics express concern that genetic testing and gene therapy will change fundamental social values—for example, leading to greater discrimination against the disabled. Yet the dire predictions of certain vocal critics—describing a genetic Armageddon or a future of cloned despots—sometimes obscure a close analysis of the actual benefits and risks of genetic technologies.


    Charting the Future of Genetic Policy


    A multitude of policy decisions are made each day about genetics. Some of these decisions are most appropriately made by health care providers or business organizations, while others may be better addressed by professional or trade organization guidelines or by formal laws or regulations. No matter at what level the issues are addressed, we all need better information about what genetic technologies can and cannot do.

    In this book, I analyze the three frameworks by which most health care services in the United States are regulated: the medical model, the public health model, and the fundamental rights model. Then, in order that the reader may determine which framework is appropriate for genetic services, I describe the impact of genetic services on self-image, personal relationships, reproductive decisions, parenting, group identity, and treatment by social institutions, and discuss the problem of ensuring the quality of genetic services. This illustrates how the medical, public health, and fundamental rights approaches can influence the type of information we receive about genetic services, the control we have over whether genetic services will be used on us without our knowledge or consent, and the kinds of decisions that will be made about us based on our genes.

    Genetic services are now emerging at a rate that challenges our ability to determine appropriate policy. Decision makers must catch up with these technologies to avert misuse of genetic information. In order to escape the myriad conflicting and overlapping policies that act only as Band-Aids to the problems, we must lay the foundation by choosing a framework that best suits the issues surrounding the use of genetic services. We must also avoid the simplicity of genetic determinism. In many cases, our genes only predispose us to certain traits or represent the probability that certain diseases will manifest. Even this information, however, can be dangerous without safety mechanisms in place that will allow neutral policymaking, educate the public, secure suitable quality assurance measures, and ensure voluntary informed consent.

    In June 2000, researcher J. Craig Venter, president of Celera Genomics Corporation, along with Francis Collins, director of the National Human Genome Research Institute, announced the completion of a rough draft of the sequence of the entire human genome. Ready or not, both as individuals and as members of society we are faced with momentous decisions about the uses and abuses of genetics.

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Table of Contents

Acknowledgments
Ch. 1 Genetics Enters Our Lives 1
The Rapid Integration of Genetic Tests Into Clinical Practice 2
How Genetics Differs from Other Medical Realms 5
Commercialism in Genetics 8
Simplifying Genetic Tests 10
Exaggerated Faith in Genetics 11
Charting the Future of Genetic Policy 13
2 Competing Frameworks for Genetics Policy 15
Historical Context of Genetics 19
Alternative Frameworks 21
The Medical Model 22
The Public Health Model 25
The Fundamental Rights Model 27
Seeking a Framework for the Future of Genetics 29
3 The Impact of Genetic Services on Personal Life 31
Impact on Self-Concept 31
Use of Genetic Services 40
4 The Changing Face of Parenthood in the Genetics Era 56
Impact on Reproduction 56
Impact on Decision About Children 66
Reconceiving Parenthood 75
5 The Impact of Genetic Services on Women, People of Color, and Individuals with Disabilities 77
Women and Genetic Services 77
People of Color and Genetic Services 90
Individuals with Disabilities and Genetic Services 97
Protecting the Disadvantaged 106
6 Problems in the Delivery of Genetic Services 107
Physician Knowledge About Genetics 108
Quality Assurance in Testing 110
Genetic Hubris 116
Medical Pressure to Use Genetic Services 119
Impact of Physicians Beliefs and Personalities on the Provision of Genetic Information 122
Informational Materials About Genetics 124
Enhancing the Quality of Genetic Services 129
7 The Impact of Genetics on Cultural Value and Social Institutions 130
Predicting Future Academic Worth 131
Predicting Future Health Care Needs 132
Statutory Responses to Insurance and Employment Discrimination 138
The Lack of Protection for Medical Information in General 140
DNA and Social Decision Making 142
Genetic Determinism Takes Hold 145
8 Which Conceptual Model Best Fits Genetics? 151
The Medical Model 152
The Public Health Model 153
The Fundamental Rights Model 160
Legal Justification for the Fundamental Rights Model 170
Drawing the Line in the Genetics Realm 173
Combating Genetic Hubris 176
Notes 179
Index 249
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Interviews & Essays

Author Essay
It may seem strange to see a law professor's books -- Future Perfect, Body Bazaar, and The Clone Age -- listed in the Science section of Barnes & Noble, but my whole legal career has involved an interaction with science. I've handled cases, drafted laws, and advised international science ministers about genetic screening, embryo stem cell research, DNA banks, and reproductive technologies. One night, a scientist called me at home. "I have a severed head here," he said. "This man wrote in his will that he wanted his head kept and reattached to a healthy body. What are the legal rights of a severed head?" The government of Dubai, in the United Arab Emirates, invited me to be part of a group to develop laws to deal with human cloning. They had decided to clone only men.

In my memoir, The Clone Age, I admit that I'm increasingly feeling like the Harvey Keitel character in Pulp Fiction. I am the cleanup person that scientists call to sort out the rights and responsibilities after they do some new weird technique. But radical changes in the nature of science over the past two decades have caused me to rethink that role.

In this biotechnology era, the biological sciences have become so commercialized that it is difficult to find a neutral scientist to advise you on the risks or benefits of a new technology. The majority of university biologists have either founded biotech companies or sit on their boards. Researchers at universities and even at the National Institutes of Health are now patenting the human genes they work on. So it is in their commercial interest to have as many people tested genetically as possible, without regard for the potential psychological or social consequences.

In Future Perfect, I provide advice for ordinary people confronting the possibility of genetic testing. Internists test for cancers and early heart disease. Obstetricians predict a fetus's future health. Even dentists offer a genetic test that supposedly predicts future periodontal disease. The commercial pressures to test are great; but, until I started the research for this book, I didn't realize how profoundly genetic information can change a person's self-image and personal relationships. I uncovered examples where employers secretly tested their workers for genetic predispositions for disease, and where divorce courts ordered genetic tests on parents to award custody of a child to the parent with the presumed longer lifespan (rather than the one who might be a better parent).

In Body Bazaar: The Market for Human Tissue in the Biotechnology Age, Dorothy Nelkin and I document how human tissue is not just a source of information (as in genetic testing) but the raw material for commercial products. Doctors now view their patients as treasure troves. Yet when a patient sued his doctor for theft when the doctor took blood, sperm, and bone marrow from the patient and patented a commercial cell line out of it, the court held that the doctor could have a property interest in the tissue but the patient could not. Think of the implications. If your tissue is not your property, a mortgage company could ask your doctor to test the blood from your last physical to assess your genetic risks before granting you a loan. And Bill Gates's barber could take a follicle of his hair, clone Bill Gates (perhaps making Gates 6.0) and then sue Gates for child support.

Why do I write popular nonfiction in addition to taking these issues to courts and legislatures? My hope is to arm everybody who is offered genetic testing or whose tissue might be taken for the biotech market to ask the right questions before they proceed. (Lori Andrews)

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