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Results for “Genetic Privacy”

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PubMed2003

The social life of genes: privacy, property and the new genetics.

With the advent of the Human Genome Project and widespread fears over human cloning and medical privacy, a number of states have moved to protect genetic privacy. Oregon's unique Genetic Privacy Act of 1995, which declared that an individual had property rights to their DNA, has provoked national and international interest and controversy. This paper critically reviews the literature on genetic privacy and gene patenting from law, philosophy, science and anthropology. The debate in Oregon, from 1995 to 2001, illustrates many of the key issues in this emerging area. Both sides of the debate invoke the property metaphor, reinforcing deterministic assumptions and avoiding more fundamental questions about the integrity of the body and self-identity. The anthropological critique of the commodification of the body, and the concept of 'embodiment' are useful in analyzing the debate over DNA as property.

Anthropology↗
PubMedDate not supplied

[Right to privacy, reservation or secret. Changes in perspective of research on human genome].

1. Three kinds of privacy can be identified: territorial, bodily and, thirdly, psychological or spiritual. Cases and examples of each. 2. Two aspects are involved in breaches of the right to privacy--in any of its three forms-: the actual invasion of someone's privacy and the subsequent publication of the product thereof. 3. The right to privacy can enter into conflict with other constitutionally protected right such as the right to information, freedom of expression and freedom of scientific enquiry. 4. Research on the human genome has opened up a new area in privacy, given that it is unlawful to intrude into the genetic structure of a person without said person's lawful consent. Nothing is more private than a person's own individual genetic code. There may be exceptions to the right to genetic privacy: cases of lawful intrusion. 5. Unwarranted intrusion: discrimination in school admissions, employment contracts and insurance policies.

Genome, Human↗
PubMed2001

Privacy and confidentiality of genetic information: what rules for the new science?

This review covers the ethical, legal, and policy issues associated with the generation and dissemination of genetic information. First, conceptual issues, such as the definition of terms and the description of two modes of analysis, are addressed. Research findings on public attitudes toward privacy and genetics and other factors relevant to policy making are also reviewed. Second, the example of genetic research is used to highlight the importance of attention to the intrinsic harms associated with violations of genetic privacy. Subtopics include national databases and biobanks, gene brokers, and pharmacogenomics. Third, the example of insurer access to genetic information is used to highlight the importance of attention to discrimination and other instrumental harms associated with failures of regulation. Fourth, a summary of the preceding sections leads into an outline of a program for realizing the benefits of the new science in a manner that affirms rather than erodes privacy and other important values.

Confidentiality↗
PubMed2001

The impact of the Human Genome Project on medical genetics.

The near completion of the Human Genome Project stands as a remarkable achievement, with enormous implications for both science and society. For scientists, it is the first step in a complex process that will lead to important advances in the diagnosis and treatment of many diseases. Society, meanwhile, must prevent genetic discrimination, and protect genetic privacy through appropriate legislation.

Ethics, Medical↗
PubMed2004

FACE facts: why human genetics will always provoke bioethics.

Some people dispute the relative importance of issues in genetics and biotechnology for the future of bioethics, either because they think the problems are time-limited or because they give priority to issue of human rights and social justice in health care. In fact, the special historical standing of genetic issue s in bioethics reflects four overlapping sources of moral sensitivity which ar inherent in the stories that genetic science tells and raise paradigmatic justice concerns: the implications of new genetic knowledge for people's understanding of their familial roles, ancestral origins, community memberships, and ethnic affiliations. Beneath worries over "genetic privacy," "the therapeutic gap," and the "post-human," this constellation of basic wellspring which both insures and justifies a central place for genetics on the agenda of bioethics.

Bioethical Issues↗
PubMed1993

Confidentiality in genetic testing: legal and ethical issues in an international context.

This comparative legal study on confidentiality in genetic testing examines three levels of communication of genetic information: the personal; the familial; and the institutional third parties. At the first two levels, it is argued that the approach is one that recognizes genetic individuality and reciprocity within the physician-patient relationship without legislative interference. This stands in contrast to the possible use of genetic information by economic third parties or, even, that of the state with respect to the DNA profiling of the genetic identity of criminals, the approach for both areas being the promulgation of 'genetic-specific' or human rights legislation with the hope of preventing discrimination. This rush to constrain the impact of genetic information through legislation is criticized since it may well lead to further stigmatization. The author proposes the promotion of the concept of genetic privacy within the broader rubric of informational self-determination.

Confidentiality↗