Genetic privacy: a challenge to medico-legal norms
The conflation of autonomy with consent that is typical of current approaches to medicolegal dilemmas reduces the means of respecting individuals to one solitary event—the obtaining of informed consent… [which] means that informed consent has come to be the primary, and arguably the only, legitimate...
| Main Author: | |
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| Format: | Electronic Review |
| Language: | English |
| Check availability: | HBZ Gateway |
| Journals Online & Print: | Drawer...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Published: |
BMJ Publ.
2003
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| In: |
Journal of medical ethics
Year: 2003, Volume: 29, Issue: 6, Pages: 373-374 |
| Further subjects: | B
Book review
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| Online Access: |
Volltext (JSTOR) Volltext (kostenfrei) Volltext (kostenfrei) |
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| 520 | |a The conflation of autonomy with consent that is typical of current approaches to medicolegal dilemmas reduces the means of respecting individuals to one solitary event—the obtaining of informed consent… [which] means that informed consent has come to be the primary, and arguably the only, legitimate way of empowering individuals in their dealings with health care professionals and researchers. This is also true in the spheres of intellectual property and biotechnology. But this need not and should not be so (p 310). The above quotation illustrates the jurisprudential depth and philosophical reach of the arguments in what might be wrongly assumed to be a technical treatise on confidentiality concerning genetic data. Developing a wider notion of property rights in the person, Laurie offers prescriptions of potentially enormous relevance to current debates in public policy, including the deliberations of the Retained Organs Commission and the simultaneous wider Department of Health consultation Human Bodies, Human Choices. My own view is that precisely what is wrong with the DOH consultation document is that it views informed consent as the be all and end all in patient empowerment. Properly understood, property rights in the person can function as a useful partner to informed consent in protecting vulnerable individuals and groups from unauthorised taking. (Indeed, this view—similar to Laurie’s—does underpin another recent policy document, the Human Genetics Commission’s May 2002 report Inside Information, the report of a working group chaired by Laurie’s Edinburgh colleague Alexander McCall Smith.)Laurie divides his book into three sections, the first an extended discussion of what basis there may be for attaching value to privacy in health care. The second of the two chapters in this … | ||
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