Future Perfect - Hardcover

Andrews, Lori

Hardcover

ISBN 10: 0231121628 ISBN 13: 9780231121620

Publisher: Columbia University Press, 2001

Synopsis

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.

About this title

About 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.

From the Inside Flap

What you need to know about genetic testing

Will genetic testing make you healthier?

"The physiological and psychological harm from increased stress may offset any benefit of increased surveillance. . . . Moreover even when a treatment is offered to a presymptomatic individual, that treatment . . . brings its own physical and psychological risks." (p. 42)

What does a positive test result really tell you?

"If a disease has a one in 15,000 incidence and the test for it is 99.9 percent accurate, with a 0.1 percent false-positive rate, that means there will be fifteen false positives for each true positive." (p. 109)

Should your doctor help you decide?

"Physicians have a much different view of particular disabilities than do people with those disabilities. When asked to evaluate the quality of their lives, 80 percent of doctors said pretty good, but 82 percent indicated that their quality of life would be pretty low if they had quadriplegia. In contrast, 80 percent of people with quadriplegia rated the quality of their lives as pretty good." (p. 104)

Will the government protect you?

"Academic, government, hospital, and commercial laboratories are not marketing tests but are using their own ingredients, known in the trade as home brews.´ And the FDA has not aggressively regulated home brews - even though they are being used in tests that are sold to patients who then make crucial decisions, such as whether to have surgery or an abortion, based on the results. . . . Of the 43 biotech companies and 215 not-for-profit organizations that used 'home brew´ genetic testing and responded to the survey, only 15.6 percent had contacted the FDA." (p. 113)

How effective is gene therapy?

"By March 2000, more than four thousand patients had participated in gene therapy experiments. No studies found clear benefits from any type of gene therapy being tested." (p. 127)

What will happen to insurance policies?

"As genetic technologies identify which currently healthy people will later develop which particular diseases, insurance companies have been charging exorbitant amounts to people predicted to be at genetic risk, or denying them coverage entirely. . . . Since each of us has at least five genetic defects, everyone could become uninsurable." (pp. 134-135)

Reviews

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.

Copyright 2001 Cahners Business Information, Inc.

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 Reed Business Information, Inc.

Andrews, a law professor, explores the implications and complications of advancements in genetics that potentially clash with our current values and expectations. What happens when science can identify genes associated with certain incurable diseases? What impact does that identification have on the abortion issue? What happens if your sibling is a carrier and it reflects that you are a carrier as well? What rights does a dead person have to his own DNA? Andrews shows the dangers associated with genetic studies that impact the individual's right to insurance, employment, and rights of privacy and the indirect impact on the rights of spouses, siblings, children, and family members. Andrews^B points out current and potential bias associated with race and sex. In addition to raising such important questions, the author applies various conceptual models in addressing issues born^B of genetic technologies, including a medical model, a public health model, and a fundamental rights model. However, such models and application reflect cultural values for which there is no consensus. Still, Andrews' book provides thoughtful insights to help address these issues. Vernon Ford
Copyright © American Library Association. All rights reserved

Edition details

• Publisher: Columbia University Press
• Publication date: 2001
• Language: English
• ISBN 10: 0231121628
• ISBN 13: 9780231121620
• Binding: Hardcover
• Edition number: 1
• Number of pages: 288