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      Informed Consent in Genomics and Genetic Research

      Author(s): 1 , 2
      Publication date Created:
      Publication date (Print):
      Journal: Annual Review of Genomics and Human Genetics
      Publisher: Annual Reviews

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          Abstract

          There are several features of genetic and genomic research that challenge established norms of informed consent. In this paper, we discuss these challenges, explore specific elements of informed consent for genetic and genomic research conducted in the United States, and consider alternative consent models that have been proposed. All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible.

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          Should donors be allowed to give broad consent to future biobank research?

          Joakim Dillner, Gert Helgesson, Mats Hansson … (2006)
          Large international biobank studies can make substantial contributions to scientific research by validation of the biological importance of previous research and by identification of previously unknown causes of disease. However, regulations for patient consent that are too strict and discrepancies in national policies on informed consent might hinder progress. Therefore, establishment of common ground for ethical review of biobank research is essential. In this essay, broad consent is defined on a scale between strictly specified (eg, for a specific study) and blanket consent (ie, with no restrictions regarding the purpose of the research). Future research includes that which might not be planned or even conceptualised when consent is obtained. In conclusion, broad consent and consent for future research are valid ethically and should be recommended for biobank research provided that: personal information related to research is handled safely; donors of biological samples are granted the right to withdraw consent; and new research studies or changes to the legal or ethical authority of a biobank are approved by an ethics-review board.
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            Genetics. Genomic research and human subject privacy.

            Zhen Lin, Art Owen, Russ Altman (2004)
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              The impact of presumed consent legislation on cadaveric organ donation: a cross-country study.

              Alberto Abadie, Sébastien Gay (2006)
              In the U.S., Great Britain and in many other countries, the gap between the demand and the supply of human organs for transplantation is on the rise, despite the efforts of governments and health agencies to promote donor registration. In some countries of continental Europe, however, cadaveric organ procurement is based on the principle of presumed consent. Under presumed consent legislation, a deceased individual is classified as a potential donor in absence of explicit opposition to donation before death. This article analyzes the impact of presumed consent laws on donation rates. For this purpose, we construct a dataset on organ donation rates and potential factors affecting organ donation for 22 countries over a 10-year period. We find that while differences in other determinants of organ donation explain much of the variation in donation rates, after controlling for those determinants presumed consent legislation has a positive and sizeable effect on organ donation rates. We use the panel structure of our dataset to test and reject the hypothesis that unmeasured determinants of organ donation rates confound our empirical results.
              Article 0 comments Cited 86 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Title: Annual Review of Genomics and Human Genetics
                Abbreviated Title: Annu. Rev. Genom. Hum. Genet.
                Publisher: Annual Reviews
                ISSN (Print): 1527-8204
                ISSN (Electronic): 1545-293X
                Publication date Created: September 2010
                Publication date (Print): September 2010
                Volume: 11
                Issue: 1
                Pages: 361-381
                Affiliations
                [1 ]Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston,Texas 77030; email:
                [2 ]Duke Institute for Genome Sciences and Policy, Center for Genome Ethics, Law and Policy, Duke University, Durham, North Carolina 27708
                Article
                DOI: 10.1146/annurev-genom-082509-141711
                PMC ID: 3216676
                PubMed ID: 20477535
                SO-VID: b7675040-9324-4ebb-9e1a-60e84b42030c
                Copyright © © 2010
                History

                ScienceOpen disciplines: Molecular medicine,Biomedical engineering,Bioinformatics & Computational biology,Biotechnology,Genetics,Public health
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                ScienceOpen disciplines: Molecular medicine, Biomedical engineering, Bioinformatics & Computational biology, Biotechnology, Genetics, Public health

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