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Results for “Genetic Privacy”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

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At least 631 records · Page 35Linked to original sources
PubMed2002

Genetics decision-making: a template for problems with informed consent.

Developments in information technology and advances in genetics present challenges to physicians in terms of providing adequate informed consent. Genetic mechanisms and related therapies are very complex and involve a number of uncertainties. Yet, physicians have very little training in genetics or in dealing with uncertainty. Further, genetic decisions impact others, yet physicians are trained to see the patient as an individual, independent decision-maker. Cultural, ethnic, gender, religious and other differences influence patients in their genetic decision-making, but physicians have little training in understanding these kinds of influences. Genetic information also gives knowledge about disease and dysfunction where no therapeutic intervention is available. Physicians are trained to heal in crisis situations, to engage in therapeutic intervention and not always to deal with chronic or unresolved illness. They may find this situation difficult to handle in an informed consent context. All ofthese difficulties pose the possibility that physicians will not be "informed" enough to facilitate good informed consent in genetic decision-making. Given all of this we need to address fundamental changes in medical education.

Decision Making↗
PubMed2001

Biosamples, genomics, and human rights: context and content of Iceland's Biobanks Act.

In recent years, human DNA sampling and collection has accelerated without the development of enforceable rules protecting the human rights of donors. The need for regulation of biobanking is especially acute in Iceland, whose parliament has granted a for-profit corporation, deCODE Genetics, an exclusive license to create a centralized database of health records for studies on human genetic variation. Until recently, how deCODE Genetics would get genetic material for its genotypic-phenotypic database remained unclear. However, in May 2000, the Icelandic Parliament passed the Icelandic Biobanks Act, the world's earliest attempt to construct binding rules for the use of biobanks in scientific research. Unfortunately, Iceland has lost an opportunity for bringing clear and ethically sound standards to the use of human biological samples in deCODE's database and in other projects: the Biobanks Act has extended a notion of "presumed consent" from the use of medical records to the use of patients' biological samples; worse, the act has made it possible--perhaps likely--that a donor's wish to withdraw his/her sample will be ignored. Inadequacies in the Act's legislative process help account for these deficiencies in the protection of donor autonomy.

Blood Specimen Collection↗
PubMed2000

A wild gene chase.

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Databases, Nucleic Acid↗