TY - JOUR AU - Smith, Maureen E. AU - Sanderson, Saskia C. AU - Brothers, Kyle B. AU - Myers, Melanie F. AU - McCormick, Jennifer AU - Aufox, Sharon AU - Shrubsole, Martha J. AU - Garrison, Nanibaá A. AU - Mercaldo, Nathaniel D. AU - Schildcrout, Jonathan S. AU - Clayton, Ellen Wright AU - Antommaria, Armand H. Matheny AU - Basford, Melissa AU - Brilliant, Murray AU - Connolly, John J. AU - Fullerton, Stephanie M. AU - Horowitz, Carol R. AU - Jarvik, Gail P. AU - Kaufman, Dave AU - Kitchner, Terri AU - Li, Rongling AU - Ludman, Evette J. AU - McCarty, Catherine AU - McManus, Valerie AU - Stallings, Sarah AU - Williams, Janet L. AU - Holm, Ingrid A. PY - 2016 DA - 2016/11/24 TI - Conducting a large, multi-site survey about patients’ views on broad consent: challenges and solutions JO - BMC Medical Research Methodology SP - 162 VL - 16 IS - 1 AB - As biobanks play an increasing role in the genomic research that will lead to precision medicine, input from diverse and large populations of patients in a variety of health care settings will be important in order to successfully carry out such studies. One important topic is participants’ views towards consent and data sharing, especially since the 2011 Advanced Notice of Proposed Rulemaking (ANPRM), and subsequently the 2015 Notice of Proposed Rulemaking (NPRM) were issued by the Department of Health and Human Services (HHS) and Office of Science and Technology Policy (OSTP). These notices required that participants consent to research uses of their de-identified tissue samples and most clinical data, and allowing such consent be obtained in a one-time, open-ended or “broad” fashion. Conducting a survey across multiple sites provides clear advantages to either a single site survey or using a large online database, and is a potentially powerful way of understanding the views of diverse populations on this topic. SN - 1471-2288 UR - https://doi.org/10.1186/s12874-016-0263-7 DO - 10.1186/s12874-016-0263-7 ID - Smith2016 ER -