Future Perfect: Confronting Decisions About Genetics

by Andrews, Lori B.

• ISBN13: 9780231121620
• ISBN10: 0231121628
• Edition: 1st
• Format: Hardcover
• Copyright: 2001-04-01
• Publisher: COLUMBIA UNIV PRESS

Summary

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.

Table of Contents

Acknowledgments	xi
Genetics Enters Our Lives	1	(14)
The Rapid Integration of Genetic Tests Into Clinical Practice	2	(3)
How Genetics Differs from Other Medical Realms	5	(3)
Commercialism in Genetics	8	(2)
Simplifying Genetic Tests	10	(1)
Exaggerated Faith in Genetics	11	(2)
Charting the Future of Genetic Policy	13	(2)
Competing Frameworks for Genetics Policy	15	(16)
Historical Context of Genetics	19	(2)
Alternative Frameworks	21	(1)
The Medical Model	22	(3)
The Public Health Model	25	(2)
The Fundamental Rights Model	27	(2)
Seeking a Framework for the Future of Genetics	29	(2)
The Impact of Genetic Services on Personal Life	31	(25)
Impact on Self-Concept	31	(9)
Use of Genetic Services	40	(16)
The Changing Face of Parenthood in the Genetics Era	56	(21)
Impact on Reproduction	56	(10)
Impact on Decisions About Children	66	(9)
Reconceiving Parenthood	75	(2)
The Impact of Genetic Services on Women, People of Color, and Individuals with Disabilities	77	(30)
Women and Genetic Services	77	(13)
People of Color and Genetic Services	90	(7)
Individuals with Disabilities and Genetic Services	97	(9)
Protecting the Disadvantaged	106	(1)
Problems in the Delivery of Genetic Services	107	(23)
Physician Knowledge About Genetics	108	(2)
Quality Assurance in Testing	110	(6)
Genetic Hubris	116	(3)
Medical Pressure to Use Genetic Services	119	(3)
Impact of Physicians' Beliefs and Personalities on the Provision of Genetic Information	122	(2)
Informational Materials About Genetics	124	(5)
Enhancing the Quality of Genetic Services	129	(1)
The Impact of Genetics on Cultural Value and Social Institutions	130	(21)
Predicting Future Academic Worth	131	(1)
Predicting Future Health Care Needs	132	(6)
Statutory Responses to Insurance and Employment Discrimination	138	(2)
The Lack of Protection for Medical Information in General	140	(2)
DNA and Social Decision Making	142	(3)
Genetic Determinism Takes Hold	145	(6)
Which Conceptual Model Best Fits Genetics?	151	(28)
The Medical Model	152	(1)
The Public Health Model	153	(7)
The Fundamental Rights Model	160	(10)
Legal Justification for the Fundamental Rights Model	170	(3)
Drawing the Line in the Genetics Realm	173	(3)
Combating Genetic Hubris	176	(3)
Notes	179	(70)
Index	249