Kyle B Brothers1, Mathew J Westbrook2, M Frances Wright2, John A Myers3, Daniel R Morrison4, Jennifer L Madison5, Jill M Pulley5, Ellen Wright Clayton6. 1. Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Department of Pediatrics, Vanderbilt University & the Monroe Carell Jr.Children's Hospital at Vanderbilt, Nashville, TN, USA ; Kosair Charites Pediatric Clinical, Research Unit, Department of Pediatrics, University of Louisville, School of Medicine, Louisville, KY, USA. 2. Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA. 3. Child Health Services Research Unit, Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA. 4. Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Social Science Division, Pepperdine University, Malibu, CA, USA. 5. Office of Research, Vanderbilt University School of Medicine, Nashville, TN, USA. 6. Center for Biomedical Ethics & Society, Vanderbilt University, Nashville, TN, USA ; Department of Pediatrics, Vanderbilt University & the Monroe Carell Jr.Children's Hospital at Vanderbilt, Nashville, TN, USA.
Abstract
AIM: In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository. MATERIALS & METHODS: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA). RESULTS: 32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%. CONCLUSION: These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.
AIM: In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository. MATERIALS & METHODS: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA). RESULTS: 32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%. CONCLUSION: These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.
Entities:
Keywords:
exit interviews; human nonsubjects biorepository; iorepository; opt-out research; research ethics
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