TY - JOUR
T1 - Informed Consent in Biomedical Research
AU - Dankar, Fida K.
AU - Gergely, Marton
AU - Dankar, Samar K.
N1 - Funding Information:
Community-based participatory research (CBPR) is a collaborative research between scientists and the community affected directly by the research (such as a group with a common illness) [ 95 ]. CBPR is characterized by shared decision making, shared management and ownership, transfer of knowledge and expertise, shared analysis and interpretation of data, and wide dissemination of findings [ 82 ]. While CBPR is developing rapidly, it can be complicated and challenging. It requires significant commitment from community members (particularly for pursuing grants) requiring them to give up some of their existing roles. However, there are growing numbers of funding opportunities dedicated to CBPR, including new National Institute of Health (NIH) sponsored funding, as well as fellowship programs, workshops, and courses [ 95 ].
Funding Information:
This work is supported by the UAE University research grant UPAR #31T121, UAE . We would like to thank the anonymous reviewers for their helpful comments/suggestions on earlier drafts of the manuscript.
Publisher Copyright:
© 2019 The Authors
PY - 2019
Y1 - 2019
N2 - Informed consent is the result of tumultuous events in both the clinical and research arenas over the last 100 years. Throughout this time, the notion of informed consent has shifted tremendously, both due to advances in medicine, as well as the type of data being gathered. As such, informed consent has misaligned with the goals of medical research. It is becoming more and more vital to address this chasm, and begin building new frameworks to link this disconnect. Thus, we address three goals in this paper. First, we discuss the history of informed consent and unify the varying definitions of the term. Second, we evaluate the current research on the topic, classify them into themes, and attend to the problems therein. Lastly, we employ these themes of informed consent research mentioned previously to provide guidance and insight for future research in the arena.
AB - Informed consent is the result of tumultuous events in both the clinical and research arenas over the last 100 years. Throughout this time, the notion of informed consent has shifted tremendously, both due to advances in medicine, as well as the type of data being gathered. As such, informed consent has misaligned with the goals of medical research. It is becoming more and more vital to address this chasm, and begin building new frameworks to link this disconnect. Thus, we address three goals in this paper. First, we discuss the history of informed consent and unify the varying definitions of the term. Second, we evaluate the current research on the topic, classify them into themes, and attend to the problems therein. Lastly, we employ these themes of informed consent research mentioned previously to provide guidance and insight for future research in the arena.
KW - Biomedical data
KW - Biomedical research
KW - Informed consent
KW - Medical care
KW - Privacy
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U2 - 10.1016/j.csbj.2019.03.010
DO - 10.1016/j.csbj.2019.03.010
M3 - Review article
AN - SCOPUS:85063983645
SN - 2001-0370
VL - 17
SP - 463
EP - 474
JO - Computational and Structural Biotechnology Journal
JF - Computational and Structural Biotechnology Journal
ER -