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

ISBN-13: 9789048159079 / Angielski / Miękka / 2010 / 276 str.

A. Nordgren

Opis

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.

Spis treści

Acknowledgments. Introduction. 1: Moral Responsibility and Moral Imagination. 1. The Metaphor of Moral Responsibility. 2. Engineering or `Tinkering' in Moral Reasoning? 3. Imaginative Casuistry vs. Other Normative Positions. 4. Imaginative Casuistry in Bioethics. 2: Moral Responsibility in Science. 1. Research Ethics. 2. Responsibility `of'. 3. Responsibility `to'. 4. Responsibility `for': Choice of Subject. 5. Responsibility `for': Research and Publication. 6. Responsibility `for': Application. 7. Content and Form of Responsibility: General Proposals. 3: The Human Genome Project: Justification, Promotion, and Access to Results. 1. Summary and Application: Responsible Genetics. 2. Dialogue and the Human Genome Project. 3. Justification of the HGP. 4. Promotion of the HGP. 5. Genetic Knowledge: Open Access or Private Patents? 4: Gene Hunting, Genetic Testing, and Genetically Tailor-Made Drugs. 1. Dialogue in Genetic Research and Application. 2. Gene Hunting in Families. 3. Gene Hunting in Ethnic Groups. 4. Genetic Testing and Genetic Counseling. 5. Genetic Screening and Public Health Work. 6. Genetic Information in Employment and Insurance. 7. Genetically Tailor-Made Drugs. 5: Genetic Modification of Humans and Laboratory Animals. 1. Dialogue and Gene Therapy. 2. Germline Gene Therapy. 3. Genetic Enhancement. 4. Animals Used inHuman Genetics Research. 6: Eugenics and the Long Term Goals of Reprogenetic Medicine. 1. Responsibility for Applications of Genetics: Professional Policy. 2. Dialogue on the Long Term Goals of Reprogenetic Medicine. 3. Learning from History: Eugenics. 4. Genotypic Prevention vs. Reproductive Autonomy: Three Prototypical Views. 5. Proposals regarding the Long Term Goals of Reprogenetic Medicine. Bibliography. Index.