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 examine drawing on genetic databases has extended quickly lately. on occasion, this knowledge has been mixed with info on participants' health and wellbeing, way of life or family tree. preserving the knowledge to be had from such databases has accordingly emerged as a hugely advanced moral factor within the well-being coverage area. This publication combines theoretical and empirical learn to debate the improvement of a world regulatory framework to supply useful guidance.In this quantity, the Geneva foreign educational community (GIAN), the dep. of Ethics, exchange, Human Rights and wellbeing and fitness legislations (ETH) of the area future health association, and the Institute of Biomedical Ethics of Geneva collage have joined jointly to check the stipulations below which genetic databses will be confirmed, saved, and made use of in an ethically applicable approach. The paintings contains a finished overview of the clinical literature in addition to a comparative research of latest normative frameworks. Unresovled and debatable matters are taken up in empirical reports and the consequences mixed with research to provide draft innovations in the direction of a global framework.The e-book can be a priceless source for researchers and practitioners operating within the improvement, upkeep and law of biobanks.

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Chapter 4. Guidelines on Biobanks 25 and how they are going to be used, the detail of available information to the sample donor may be limited. Does limited information about research details invalidate consent as one would argue it would do in the case of other biomedical research projects? If the sample were to be used for a project different to the one described in the consent form would the individual have to re-consent? What if the individual cannot be reached? International guidelines do not have a unanimous answer to these questions and consequently a variety of recommendations as regards valid consent has emerged.

2005), “Biobanking: international norms,” The Journal of Law, Medicine and Ethics 33:1, 7-14. M. and Chadwick, R. (2005), “Human genetic research: emerging trends in ethics,” Nature Reviews: Genetics 6:1, 75-9. M. and Saginur, M. (2005), “The Babel of Genetic Data Terminology,” Nature Biotechnology 23, 925-27. Le Bris, S. M. (1997), “International and Comparative Concepts of Privacy,” in M. ), Genetic Secrets (New Haven: Yale University Press), 418-48. , Ankeny, R. and Kerridge, I. (2006), “Consent in crisis: the need to reconceptualize consent to tissue banking research,” Internal Medicine Journal 36:2, 124-28.

6. Conclusions While the described set of international guidelines is of prime importance for biobanking they have been for the most part more general than explicit. Moreover, they are not necessarily consistent in their recommendations and when guidance is necessary they often delegate the decisional authority to national laws or to reviews to be carried out by research ethics committees. In some instances a case by case decision might be the best option. However the lack of a uniform framework within which a decision is made can easily result, as it already has, in various approaches and contradicting decisions about the same aspects of a research project.

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