Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview
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A Presumed-Consent Model for Regulating Informed
Consent of Genetic Research Involving DNA Banking

B. Elger, A. Mauron

Bioethics Research and Teaching Unit, University of Geneva, Switzerland


Introduction

Several national and international organisations and committees have recently published guidelines and statements concerning genetic research and DNA-banking. These guidelines differ considerably in their recommendations as regards some ethical problems. This paper examines the following two examples: informed consent policies about DNA samples to be collected in the future and policies that regulate the type of storage (coded, anonymised, anonymous). The goal is to first describe the different positions expressed in the guidelines on these issues and to analyse the values that are given preference by individual guidelines and statements, and secondly to propose our own solution to the ethical problems which represents an intermediate position between the extremes.

In the first and second part of this article, we summarise the main views expressed on the two issues. We include published guidelines and statements1, as well as the recommendations of other important articles on these issues. Among these are the recommendations of the authors of the papers commissioned by the NBAC. They are quoted especially if they differ from the recommendations of the NBAC-report. In the third part, we analyse the ethical issues involved in the conflict and describe how values and interests that are important in the debate should be balanced from our point of view. In the fourth part, we give a description of our “presumed consent ongoing information” model (PCoiM) as a solution to the debate about informed consent and type of storage, discuss ethical critiques of and justifications for this type of consent, summarise advantages and problems of

Bartha Maria Knoppers (éd.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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