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At least 451 records · Page 25Linked to original sources
PubMed2006

The routinisation of genomics and genetics: implications for ethical practices.

Among bioethicists and members of the public, genetics is often regarded as unique in its ethical challenges. As medical researchers and clinicians increasingly combine genetic information with a range of non-genetic information in the study and clinical management of patients with common diseases, the unique ethical challenges attributed to genetics must be re-examined. A process of genetic routinisation that will have implications for research and clinical ethics, as well as for public conceptions of genetic information, is constituted by the emergence of new forms of genetic medicine, in which genetic information is interpreted in a multifactorial frame of reference. Although the integration of genetics in medical research and treatment may be a helpful corrective to the mistaken assumptions of genetic essentialism or determinism, the routinisation of genetics may have unintended consequences for the protection of genetic information, perceptions of non-genetic information and the loss of genetic research as a laboratory for exploring issues in research and clinical ethics. Consequently, new ethical challenges are presented by the increasing routinisation of genetic information in both biomedical and public spheres.

Attitude to Health↗
PubMed1997

Genetic screening: a comparative analysis of three recent reports.

Three recent reports on genetic screening published in the United Kingdom, Denmark and the Netherlands are discussed. Comparison of the Dutch report with the Danish and the Nuffield reports reveals that the Dutch report focuses on the aim of enlarging the scope for action, emphasising protection of autonomy and self-determination of the screenee more than the other two reports. The three reports have in common that the main concern is with concrete issue such as stigmatisation, discrimination, protection of the private sphere and issues linked with labour and insurance. Some potential long term consequences, however, tend to be neglected or underestimated. These omissions are pointed out.

Advisory Committees↗
PubMed1999

Genetic testing: a conceptual exploration.

This paper attempts to explore a number of conceptual issues surrounding genetic testing. It looks at the meaning of the terms, genetic information and genetic testing in relation to the definition set out by the Advisory Committee on Genetic Testing in the UK, and by the Task Force on Genetic Testing in the USA. It argues that the special arrangements that may be required for the regulation of genetic tests should not be determined by reference to the nature or technology of the test, but by considering those morally relevant features that justify regulation. Failure to do so will lead to the regulation of genetic tests that need not be regulated, and would fail to cover other tests which should be regulated. The paper also argues that there is little in the nature of the properties of gene tests, using DNA or chromosomes, that in itself justifies a special approach.

Advisory Committees↗
PubMed1999

Genetics and the British insurance industry.

Genetics and genetic testing raise key issues for insurance and employment. Governmental and public concern galvanised the British insurance industry into developing a code of practice. The history of the development of the code, issues of genetic discrimination, access to medical information, consent and the dangers of withholding information and the impact on the equity of pooled risk are explored. Proactive steps by the Association of British Insurers suggest that moral reflection not legislation is the way forward.

Disclosure↗
PubMed1999

Should we genetically test everyone for haemochromatosis?

The increasing availability of DNA-based diagnostic tests has raised issues about whether these should be applied to the population at large in order to identify, treat or prevent a range of diseases. DNA tests raise concerns in the community for several reasons. There is the possibility of stigmatisation and discrimination between those who test positive and those who don't. High-risk individuals may be identified for whom no proven effective intervention is possible, or conversely may test "positive" for a disease that does not eventuate. Controversy concerning prenatal diagnosis and termination of affected pregnancies may arise. Haemochromatosis, however, is a disease that is not only treatable but also preventable if those at high risk are identified presymptomatically. This paper will identify and discuss key issues regarding DNA-based population screening for haemochromatosis, and argue that population-based genetic screening for haemochromatosis should be supported when a number of contentious issues are addressed. In the context of a health system with limited resources haemochromatosis is the paradigm of a disorder where there is an ethical and clinical imperative to encourage presymptomatic DNA testing for all in ethnically relevant communities.

Adolescent↗
PubMed1999

Persons and their copies.

Is cloning human beings morally wrong? The basis for the one serious objection to cloning is that, because of what a clone is, clones would have much worse lives than non-clones. I sketch a fragment of moral theory to make sense of the objection. I then outline several ways in which it might be claimed that, because of what a clone is, clones would have much worse lives than non-clones. In particular, I look at various ideas connected with autonomy. I conclude that there is no basis to the claim that, because of what a clone is, clones would have much worse lives than non-clones. I therefore reject the claim that cloning human beings is morally wrong.

Cloning, Organism↗
PubMed1999

Genetic medicine: an experiment in community-expert interaction.

This project tested a two-way model of communication between lay groups and experts about genetic medicine in Perth, Western Australia. Focus group discussion with community group participants was followed by a communication workshop between community group participants and experts. Four groups of concerns or themes emerged from discussion: clinical considerations; legislative concerns; research priorities, and ethical and wider considerations. Community group concerns are not always met by the actions of "experts". This is, in part, because of the differing life-worlds of each group. However, the communication workshop showed the potential of two-way communication for both lay and expert members in understanding the others' viewpoint. Further, the approach developed here offers one possible way for community groups to participate in a substantial way in policy formulation processes.

Attitude to Health↗
PubMed2000

Who should know about our genetic makeup and why?

Recent developments in biology have made it possible to acquire more and more precise information concerning our genetic makeup. Although the most far-reaching effects of these developments will probably be felt only after the Human Genome Project has been completed in a few years' time, scientists can even today identify a number of genetic disorders which may cause illness and disease in their carriers. The improved knowledge regarding the human genome will, it is predicted, in the near future make diagnoses more accurate and treatments more effective, and thereby considerably reduce and prevent unnecessary suffering. On the other hand, however, the knowledge can also be, depending on the case, futile, distressing or plainly harmful. This is why we propose to answer in this paper the dual question: who should know about our genetic makeup and why? Through an analysis of prudential, moral and legal grounds for acquiring the information, we conclude that, at least on the levels of law and social policy, practically nobody is either duty-bound to receive or entitled to have that knowledge.

Confidentiality↗