title: Consent forms in genomics: the difference between law and practice.
abstract: Consent forms are the principal method for obtaining informed consent from biomedical research participants. The significance of these forms is increasing as more secondary research is undertaken on existing research samples and information, and samples are deposited in biobanks accessible to many researchers. We reviewed a selection of consent forms used in European Genome-Wide Association Studies (GWAS) and identified four common elements that were found in every consent form. Our analysis showed that only two of the four most commonly found elements in our sample of informed consent forms were required in UK law. This raises questions about what should be put in informed consent forms for research participants. These findings could be beneficial for the formulation of participant information and consent documentation in the future studies.
authors: HeLEX Centre for Health, Law and Emerging Technologies, Department of Public Health, University of Oxford, Oxford OX3 7LF, UK.
authors: Paula
authors: P
authors: Boddington
authors: Liam
authors: L
authors: Curren
authors: Jane
authors: J
authors: Kaye
authors: Nadja
authors: N
authors: Kanellopoulou
authors: Karen
authors: K
authors: Melham
authors: Heather
authors: H
authors: Gowans
authors: Naomi
authors: N
authors: Hawkins
mesh_terms: D032962:Consent Forms / Q000331:legislation & jurisprudence*; D032984:Ethics, Research; D036281:Genetic Research; D023281:Genomics; D006801:Humans; D035842:Research Subjects; D006113:United Kingdom