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  1. The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.Sarah Tosoni, Indu Voruganti, Katherine Lajkosz, Flavio Habal, Patricia Murphy, Rebecca K. S. Wong, Donald Willison, Carl Virtanen, Ann Heesters & Fei-Fei Liu - 2021 - BMC Medical Ethics 22 (1):1-14.
    Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the analysis; (...)
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  • Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue.Donald J. Willison, Marilyn Swinton, Lisa Schwartz, Julia Abelson, Cathy Charles, David Northrup, Ji Cheng & Lehana Thabane - 2008 - BMC Medical Ethics 9 (1):18-.
    BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe conducted seven (...)
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