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  1. Does Consent Bias Research?Mark A. Rothstein & Abigail B. Shoben - 2013 - American Journal of Bioethics 13 (4):27 - 37.
    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 differs from the group denying access. Therefore, to promote socially beneficial research, it is argued that consent should be unnecessary. After (...)
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  • Factors Affecting Willingness to Share Electronic Health Data Among California Consumers.Katherine K. Kim, Pamela Sankar, Machelle D. Wilson & Sarah C. Haynes - 2017 - BMC Medical Ethics 18 (1):25.
    Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research. (...)
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