Consent to Biobank Research: One Size Fits All?

作者: Bjørn Hofmann , Jan Helge Solbakk , Søren Holm

DOI: 10.1007/978-0-387-93872-1_1

关键词:

摘要: Express informed consent has become a standard requirement in research related to human beings, so also biobank research. However, it been argued extensively that this approach is inappropriate for and seriously hampers beneficial This chapter analyses see whether particular features require exceptional regulation. The conclusion drawn exceptionalism not defensible. Nevertheless, acknowledged certain types of challenge many the traditional approaches ethics alternative need be pursued. Four alternatives are explored: broad consent, confidentiality/privacy approach, submission researcher, conditioned authorization. Pros cons all them indicate contextual taken; one size does fit all. question “to or consent”, but how protect promote interests individuals contributing at same time as benefiting society future patients.

参考文章(51)
Meredith Wadman, Geneticists oppose consent ruling. Nature. ,vol. 404, pp. 114- 115 ,(2000) , 10.1038/35004731
Ulrik von Essen, Focusing on personal integrity violation : legal guidelines for ethical practice Uppsala universitet. pp. 129- 148 ,(2003)
H. Tristram Engelhardt, The Foundations of Bioethics ,(1996)
Marianne Levin, Mats G Hansson, Biobanks as Resources for Health Uppsala universitet. pp. 9- 20 ,(2003)
Karen J Maschke, Navigating an ethical patchwork—human gene banks Nature Biotechnology. ,vol. 23, pp. 539- 545 ,(2005) , 10.1038/NBT0505-539
B. P. Fuller, ETHICS:Privacy in Genetics Research Science. ,vol. 285, pp. 1359- 1361 ,(1999) , 10.1126/SCIENCE.285.5432.1359
Stefan Eriksson, Mapping the Debate on Informed Consent Uppsala Universitet. pp. 165- 196 ,(2003)
John Harris, Kirsty Keywood, Ignorance, information and autonomy. Theoretical Medicine and Bioethics. ,vol. 22, pp. 415- 436 ,(2001) , 10.1023/A:1013058801622
Onora O'Neill, Autonomy and Trust in Bioethics ,(2002)
Ruth Chadwick, Kåre Berg, Solidarity and equity: new ethical frameworks for genetic databases Nature Reviews Genetics. ,vol. 2, pp. 318- 321 ,(2001) , 10.1038/35066094