By Oonagh Corrigan, Richard Tutton
Genetic Databases deals a well timed research of the underlying tensions, contradictions and boundaries of the present regulatory frameworks for, and coverage debates approximately, genetic databases. Drawing on unique empirical learn and theoretical debates within the fields of sociology, anthropology and felony experiences, the members to this publication problem the present orthodoxy of knowledgeable consent and discover the connection among own privateness and the general public solid. in addition they ponder the a number of meanings connected to human tissue and the position of public consultations and advertisement involvement within the production and use of genetic databases. The authors argue that coverage and regulatory frameworks produce a illustration of participation that's frequently at odds with the reviews and understandings of these participating. The findings current a major problem for public coverage to supply mechanisms to guard the welfare of people partaking in genetic databases.
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Extra info for Genetic Databases: Socio-ethical Issues in the Collection and Use of DNA
Frow, J. (1997). Time and Commodity Culture, Essays in Cultural Theory and Postmodernity, Oxford: Clarendon Press. Gieryn, T. (1983). ‘Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists’, American Sociological Review 48: 781–795. Greenberg, W. and Kamin, D. (1993). ‘Property rights and payment to patients for cell lines derived from human tissues: an economic analysis’, Social Science and Medicine 36 (8): 1071–1076. Grubb, A.
In the cell line, the court did indeed see an example of human ingenuity and inventive effort and determined that, since Moore did not own the tissue removed from his body, he also had no claim over the cell line, thus no entitlement to a share of profits made from its commercial development. Moreover, the court concluded if the sources of tissue were to be granted property rights in human tissue, this would restrict the free exchange of biological materials and information amongst researchers and hinder future research.
In the United States, the activities of PXE International, a patient group formed for people with pseudoxanthoma elasticum (PXE) and their relatives, can be seen as an example of how a group of people with a genetic disorder have begun to exercise what could be argued to be in effect property rights over both physical tissue samples and forms of genetic information derived from both tissue and other sources (Smaglik 2000, Coghlan 2001, Fleischer 2001, Terry et al. 2001). PXE International negotiates and controls access by researchers to samples, family histories and other valuable data for research, as well as being named as co-author on scientiﬁc papers and patent applications.