Testing an Online, Dynamic Consent Portal for Large Population Biobank Research
نویسندگان
چکیده
منابع مشابه
Implementation of Electronic Consent at a Biobank: An Opportunity for Precision Medicine Research
The purpose of this study is to characterize the potential benefits and challenges of electronic informed consent (eIC) as a strategy for rapidly expanding the reach of large biobanks while reducing costs and potentially enhancing participant engagement. The Partners HealthCare Biobank (Partners Biobank) implemented eIC tools and processes to complement traditional recruitment strategies in Jun...
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Several stakeholders in the field of biobank research are currently developing and evaluating innovative consent procedures, and in doing so refer to national and international guidelines that regulate biomedical research. The objectives of this study were to present (1) a synthesis of all consent issues mentioned or required in guidelines that are of potential relevance to biobank research and...
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BACKGROUND International guidelines recommend the use of appropriate informed consent procedures in low literacy research settings because written information is not known to guarantee comprehension of study information. OBJECTIVES This study developed and evaluated a multimedia informed consent tool for people with low literacy in an area where a malaria treatment trial was being planned in ...
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INTRODUCTION Informed, voluntary, and valid consent from biomaterial donors is a precondition for biobank research. Valid consent protects donors' rights and helps maintain public trust in biobank research. Harmonization of consent procedures in biobank research is needed, because of the widely shared vision on national and international networking of biobanks including data and sample sharing....
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Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived bene...
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ژورنال
عنوان ژورنال: Public Health Genomics
سال: 2014
ISSN: 1662-4246,1662-8063
DOI: 10.1159/000366128