BMC Medical Ethics 15 (1):80 (2014)

Authors
Beatrice Godard
Université de Montréal
Abstract
In order to ensure an adequate and ongoing protection of individuals participating in scientific research, the impacts of new biomedical technologies, such as Next Generation Sequencing , need to be assessed. In this light, a necessary reexamination of the ethical and legal structures framing research could lead to requisite changes in informed consent modalities. This would have implications for Institutional Review Boards , who bear the responsibility of guaranteeing that participants are verifiably informed, and in sufficient detail, to understand the reality of genetic research as it is practiced now. Current literature allowed the identification of key emergent themes related to the consent process when NGS was used in a research setting
Keywords Participants’ protection  Institutional review boards  Next generation sequencing  Secondary use  Recontacting participants  Data sharing  Genetic research  Informed consent  Vulnerable populations  Mental health  Brain disorders
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DOI 10.1186/1472-6939-15-80
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