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      Informed Consent in Genomics and Genetic Research

      1 , 2

      Annual Review of Genomics and Human Genetics

      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?

          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.

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              Pleiotropic scaling of gene effects and the 'cost of complexity'.

              As perceived by Darwin, evolutionary adaptation by the processes of mutation and selection is difficult to understand for complex features that are the product of numerous traits acting in concert, for example the eye or the apparatus of flight. Typically, mutations simultaneously affect multiple phenotypic characters. This phenomenon is known as pleiotropy. The impact of pleiotropy on evolution has for decades been the subject of formal analysis. Some authors have suggested that pleiotropy can impede evolutionary progress (a so-called 'cost of complexity'). The plausibility of various phenomena attributed to pleiotropy depends on how many traits are affected by each mutation and on our understanding of the correlation between the number of traits affected by each gene substitution and the size of mutational effects on individual traits. Here we show, by studying pleiotropy in mice with the use of quantitative trait loci (QTLs) affecting skeletal characters, that most QTLs affect a relatively small subset of traits and that a substitution at a QTL has an effect on each trait that increases with the total number of traits affected. This suggests that evolution of higher organisms does not suffer a 'cost of complexity' because most mutations affect few traits and the size of the effects does not decrease with pleiotropy.
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                Author and article information

                Journal
                Annual Review of Genomics and Human Genetics
                Annu. Rev. Genom. Hum. Genet.
                Annual Reviews
                1527-8204
                1545-293X
                September 2010
                September 2010
                : 11
                : 1
                : 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
                10.1146/annurev-genom-082509-141711
                3216676
                20477535
                © 2010

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