Vol. 13 No. 4 | April 2013

Vol. 13 No. 4 | April 2013

ISBN: 1526-5161

target articles

Sickle Cell Disease and the “Difficult Patient” Conundrum

Edward J. Bergman & Nicholas J. Diamond

The convergence of sickle cell disease’s unique political, historical, cultural, medical, and psychological dimensions begets an especially distressing plight for sufferers of the disease. Too often, this convergence results in sickle cell patients being classified as “difficult.” As Autumn Fiester recently argued, traditional understanding of the “difficult” patient warrants reevalu...

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Does Consent Bias Research?

Mark A. Rothstein & Abigail B. Shoben

Researchers increasingly rely on large data sets of health information, often linked with biological specimens. In recent years, the argument has been made that obtaining informed consent for conducting records-based research is unduly burdensome and results in “consent bias.” As a type of selection bias, consent bias is said to exist when the group giving researchers access to their data diff...

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Open Peer Commentary

Data Citizenship and Informed Consent Leslie P. Francis & John G. Francis
A Review of Evidence on Consent Bias in Research Khaled El Emam, Elizabeth Jonker, Ester Moher & Luk Arbuckle
A Thick Opt-Out Is Often Sufficient Noor A. A. Giesbertz, Annelien L. Bredenoord & Johannes J. M. van Delden
How and When Does Consent Bias Research? R. H. H. Groenwold, R. van der Graaf & J. J. M. van Delden