Download Ethical issues in governing biobanks: global perspectives by Nikola Biller-Andorno, Alexander M. Capron, Bernice Elger PDF

By Nikola Biller-Andorno, Alexander M. Capron, Bernice Elger

Inhabitants genomics learn drawing on genetic databases has improved speedily in recent times. sometimes, this data has been mixed with info on members' wellbeing and fitness, way of life or family tree. maintaining the information to be had from such databases has for that reason emerged as a hugely advanced moral factor within the overall healthiness coverage enviornment. This booklet combines theoretical and empirical study to debate the advance of a global regulatory framework to supply functional guidance.In this quantity, the Geneva foreign educational community (GIAN), the dept of Ethics, exchange, Human Rights and wellbeing and fitness legislations (ETH) of the realm wellbeing and fitness association, and the Institute of Biomedical Ethics of Geneva collage have joined jointly to review the stipulations below which genetic databses will be verified, saved, and made use of in an ethically applicable method. The paintings features a accomplished assessment of the clinical literature in addition to a comparative research of latest normative frameworks. Unresovled and debatable matters are taken up in empirical experiences and the consequences mixed with research to supply draft options in the direction of a global framework.The publication could be a worthwhile source for researchers and practitioners operating within the improvement, upkeep and rules of biobanks.

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Extra info for Ethical issues in governing biobanks: global perspectives

Sample text

The scenarios, policy questions and interview protocols were developed following an extensive review of the existing literature (especially documents that provide guidance on genetic databases) and through discussions with experts in the field (see below). The methodology was tested in six pilot interviews. Data were collected through semi-structured interviews conducted on the phone and in person by members of the research team. Telephone interviews have been extensively used in empirical studies on health care and medical research (Spitzer et al.

2005), “The right to withdraw consent to research on biobank samples,” Medicine, Health Care and Philosophy 8:3, 315-321. HUGO [Human Genome Organisation] Ethics Committee (2002), Statement on Human Genomic Databases, Human Genome Organisation, 1 December 2002. HUGO [Human Genome Organisation] Ethics Committee (2000), Statement on Benefit-Sharing, Human Genome Organisation, 9 April 2000. HUGO [Human Genome Organisation] Ethics Committee (1996), Statement on the Principled Conduct of Genetics Research, Human Genome Organisation, 31 March 1996.

28 Ethical Issues in Governing Biobanks 3. Protecting confidentiality Biological samples contain potentially sensitive information about their participant. An important issue in the preparation of guidance for biobanks has been how to best protect such confidential information. The issue of protecting confidentiality can be framed within the principle of autonomy (recognizing participants’ right to decide which information should be revealed and their expectation that this information will not be divulged to third parties in any way that is not consistent with what has been consented to) but also within the principle of beneficence/non-maleficence by recognizing the importance of avoiding harm, as sensitive information that is divulged to others may be used to the disadvantage of the individual.

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