Responsible Genetics: The Moral Responsibility of Geneticists for the Consequences of Human Genetics Research

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Springer Science & Business Media, Dec 31, 2001 - Medical - 276 pages
MORAL RESPONSIBILITY AND THE HUMAN GENOME PROJECT The Human Genome Project (HGP) is now almost completed. A draft of the full DNA sequence of the human genome has recently been published (lnt. Hum. Gen. Seq. Cons., 2001; Venter et al., 2001). The project started in 1990 and was planned to be completed fifteen years later. lt is now clearly ahead of schedule. But even when the project is completed much work remains-the analysis of the function of the 30-40,000 genes in the human genome is beyond the scope of the project and willlast for decades. However, even before the HGP started, it was rather controversial from an ethical point of view; not so much because of the sequencing work as such, but because of its anticipated consequences. The results of the project might be used, for example, in developing genetic tests, genetically tailor-made drugs, and gene therapies. Some people fear that genetic testing may lead to discrimination in insurance and at the workplace. Some view the pharmaceutical companies' research on genetically tailor-made drugs as an unacceptable commercialization of science. Some anticipate that the development of gene therapy will give rise to a society in which parents want to design perfect babies with genetic enhancement techniques.
 

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Contents

MORAL RESPONSIBILITY AND MORAL IMAGINATION
1
2 ENGINEERING OR TINKERING IN MORAL REASONING?
15
3 IMAGINATIVE CASUISTRY VS OTHER NORMATIVE POSITIONS
25
4 IMAGINATIVE CASUISTRY IN BIOETHICS
41
MORAL RESPONSIBILITY IN SCIENCE
51
2 RESPONSIBILITY OF
54
3 RESPONSIBILITY TO
64
CHOICE OF SUBJECT
69
3 GENE HUNTING IN ETHNIC GROUPS
136
4 GENETIC TESTING AND GENETIC COUNSELING
146
5 GENETIC SCREENING AND PUBLIC HEALTH WORK
156
6 GENETIC INFORMATION IN EMPLOYMENT AND INSURANCE
160
7 GENETICALLY TAILORMADE DRUGS
165
GENETIC MODIFICATION OF HUMANS AND LABORATORY ANIMALS
171
2 GERMLINE GENE THERAPY
182
3 GENETIC ENHANCEMENT
198

RESEARCH AND PUBLICATION
73
APPLICATION
76
GENERAL PROPOSALS
84
THE HUMAN GENOME PROJECT JUSTIFICATION PROMOTION AND ACCESS TO RESULTS
91
2 DIALOGUE AND THE HUMAN GENOME PROJECT
92
3 JUSTIFICATION OF THE HGP
96
4 PROMOTION OF THE HGP
105
OPEN ACCESS OR PRIVATE PATENTS?
114
GENE HUNTING GENETIC TESTING AND GENETICALLY TAILORMADE DRUGS
127
2 GENE HUNTING IN FAMILIES
130
4 ANIMALS USED IN HUMAN GENETICS RESEARCH
200
EUGENICS AND THE LONG TERM GOALS OF REPROGENETIC MEDICINE
215
2 DIALOGUE ON THE LONG TERM GOALS OF REPROGENETIC MEDICINE
218
EUGENICS
223
THREE PROTOTYPICAL VIEWS
229
5 PROPOSALS REGARDING THE LONG TERM GOALS OF REPROGENETIC MEDICINE
248
BIBLIOGRAPHY
261
INDEX
271
Copyright

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Page iv - Another international view of science agrees that it is impossible in the modern world for a man of science to say with any honesty, "My business is to provide knowledge, and what use is made of the knowledge is not my responsibility...

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