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'It's all in the genes'. Is this true, and if so, _what_ is all in the genes? _Genes: A Philosophical Inquiry_ is a crystal clear and highly informative.
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- Genes: A Philosophical Inquiry by L. Gordon Graham
- Genes: A Philosophical Inquiry
- Genes : a philosophical inquiry / Gordon Graham.
Essential reading for anyone interested in science, technology, and philosophy, Genes: A Philosophical Inquiry is ideal for those wanting to find out more about the ethical implications of genetics and the future of biotechnology. Enter your Postcode or Suburb to view availability and delivery times.
Genes: A Philosophical Inquiry by L. Gordon Graham
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Due to our competitive pricing, we may have not sold all products at their original RRP. The biopsy specimen is not discarded, but stored in a "tissue bank". Bowel cancer researchers subsequently seek access to this tissue to study the genetics of bowel cancer comparing the genetic make-up of tumor cells with normal cells. Under present legislation, the man does not need to be asked if his tissue can be stored or used in this way, and it is possible that his genetic information may get into the hands of other health-care workers, employers or insurance companies.
If adopted, the inquiry's recommendations would attempt to ensure that full and informed consent is obtained for both storage and research, and that the man's genetic privacy is protected.
An examination of the history of genetics demonstrates that exploitation and breach of privacy are real possibilities and that protective measures are necessary. In developing its recommendations, the inquiry responded to specific terms of reference that included consideration of whether and to what extent a regulatory framework was needed to protect the privacy of samples and information and to provide protection from inappropriate discriminatory use of them.
The recommendations are clearly aimed at meeting these challenges and, to a large extent, they succeed. Upon closer examination, however, there is reason to suspect that, from a philosophical perspective, the inquiry did not reach its potential or realise the claim in its executive summary to be "the most comprehensive consideration of the ethical, legal and social implications of the 'New Genetics' ever undertaken".
My focus is on the way the inquiry reached the conclusion that genetic information is "essentially yours", and that protection was the only goal of real significance. The inquiry was asked to reflect on "the balance of ethical considerations relevant to the collection and uses of human genetic samples and information in Australia This was an unusual, and not insignificant, alteration to the law reform process. It was justified by the perceived complexity of the ethical issues surrounding genetic information.
AHEC was described as a body that "draws on experts in philosophy", suggesting that one of its roles was to deepen the level of philosophical inquiry. In keeping with this, an early chapter of the page document was devoted to "ethical considerations and the features of genetic information that raise ethical considerations and the ways that decisions involving ethical considerations can be justified". The chapter emphasises the need to consider issues in a contextually sensitive manner, to balance ethical considerations and to consider issues according to several ethical theories.
These theories can be thought of as lenses through which the ever-changing landscape of genetic technology can be viewed — the field is crowded with competing approaches: principlist ethics, consequentialist ethics, professional ethics, critical ethics, ethics of discussion, civic ethics and narrative ethics. The explicit emphasis on ethics in the construction of the inquiry suggests that ethical issues were dealt with in a critical, comprehensive and sophisticated manner.
When the ethical reasoning is dissected, however, it becomes evident that there was room for deeper reflection. The way the title of the report was generated illustrates this. The authors made it clear that the choice of the phrase "essentially yours" was not accidental: " This may seem a simple and uncontroversial assertion, but it reflects a moral stance that is both specific and contestable. This stance could be summarised as being a "libertarian" socio-political values base, whereby autonomy, democracy, tolerance of difference pluralism and secularism are seen as key components of flourishing societies.
The inquiry's libertarian focus is, to some extent, a direct extension of its first two terms of reference which emphasised protection. There was, however, scope to consider alternative perspectives and "[to] reflect the balance of ethical considerations relevant to the collection and uses of human genetic samples and information in Australia". This deficiency may not be immediately obvious, given the prevalence of statements such as "justice in this complex area is not susceptible to a simple vindication of individual rights.
Genes: A Philosophical Inquiry
Rather, this is an area in which strong, competing, and even directly conflicting, interests often will arise in practice. The ethical principle of mutuality recognises that the principle of individual autonomy is optimised when the strength of civil society is maximised Closer inspection reveals that this "balance" is framed within a libertarian value system. Protection, an essentially libertarian concept, is still the key goal.
Libertarianism was explicitly endorsed by the inquiry, not least in its uncritical endorsement of multiple ethical perspectives ethical pluralism being a key element of socio-political liberalism.
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The involvement of AHEC, a bioethical committee, was unlikely to challenge this emphasis, since libertarianism tends to be built in to "bioethics". Strictly speaking, the term "bioethics" simply means " ethics " — an ancient field of philosophical inquiry — applied to the bio logical realm. In practice, however, the field of "bioethics" emerged in the 20 th century as a reaction to abuses of scientific and medical power by the Nazi medical experiments. This has led to a particular emphasis on the libertarian principles of individual autonomy and non-malfeasance — protecting individuals from being harmed by the clinical or research activity.
Genes : a philosophical inquiry / Gordon Graham.
This strongly libertarian stance is so prevalent it is almost indistinguishable. It only becomes evident when alternative socio-political value systems are considered. As a socio-political framework, communitarianism emphasises different elements of a "good" or "flourishing" society, including the centrality of civic structures, connectedness and the common good. These social goods are not incompatible with libertarian values, but they elevate different elements. I believe that a communitarian perspective, had it been explored, would not have dispensed with the need for protection, but could have provided a richer way of balancing ethical considerations.
Rather than simply being an extension of protection, balance could have incorporated fundamentally different ways of looking at the problems and possibilities of genetic research. For example, the word "yours" may have been excluded from the title or it may have been given a significantly different meaning.
A communitarian perspective could have led to a more varied collection of recommendations than tightening regulation. The report may have recommended measures to stimulate altruism, to make it easier for doctors and researchers to consider the good of communities, as well as the good of individual patients and research subjects, and ways to include communities in the genetic research process, rather than simply protecting them from it.
Communities could play a direct role in risk management and in setting research priorities. Rather than being only an entity deserving of protection by ethics committees and legislation, communities could play a role in evaluating for themselves the risks and benefits of genetic research. Even more radically, communities could own the research process directly. For example, the bowel cancer "gene bank" described above could be radically reconceptualised as a community-owned and community-run bank, in which researchers and ethicists acted as consultants rather than drivers.
Donors, or their representatives, could be directly involved in running them and would, therefore, be less fearful of distant exploitation. Reconceptualising the relationship between science and communities is extreme in the current context, but probably not as far-fetched as it sounds.
Communitarian research ethics have already been applied to cross-cultural research where different ethical principles predominate. For example, not all cultures place the same emphasis on informed consent by individuals. For some cultures, it is much more important to gain the consent of community leaders than of individual research subjects.
Researchers from liberal democracies are reluctant to adjust their ethical frameworks to carry out research in this way.
This reluctance is understandable, since making changes according to culture can quickly put one on the slippery slope of moral relativism. Nonetheless, there is increasing recognition that ethical frameworks developed in one setting may not be appropriate in other settings and that communitarian ethics can account for, and accommodate some of these differences.