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EDITORIAL

Can Informed Consent Go Too Far? Balancing Consent and Public Benefit in Research
Lauren C. Milner & David Magnus

Concerns over the potential for consent bias (systematic error in research outcomes resulting from differences between consenting and non-consenting research participant groups) to influence the validity and generalizability of research results have prompted some to recommend waiving informed consent requirements for research that does not involve interactions or interventions with research partic...

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Target Article

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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