Jill M Pulley1, Margaret M Brace, Gordon R Bernard, Dan R Masys. 1. Vanderbilt University Medical Center, Vanderbilt Office of Research, 2525 West End Avenue, 6th Floor, Nashville, TN 37203-8820, USA. jill.pulley@vanderbilt.edu
Abstract
BACKGROUND: This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens ('DNA Databank' project). METHOD: A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. RESULTS: Approximately 20% of patients responded (n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents' feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. CONCLUSIONS: These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration.
BACKGROUND: This study aimed to assess patient attitudes as part of the planning process for a large-scale effort to collect genetic samples for research from excess clinical blood specimens ('DNA Databank' project). METHOD: A pre-tested, 38-item questionnaire was mailed to a random sample of 5,000 inpatients, outpatients, and emergency department patients. RESULTS: Approximately 20% of patients responded (n = 1003). Most were comfortable with anonymized genetic information being used for research (89.3%) and supported the potential benefits (98.7%). A binary logistic regression on the level of comfort with the DNA program shows that the variability in respondents' feelings about the program can best be explained by beliefs, age, and health status. Respondents were attitudinally segmented into 5 distinct categories. CONCLUSIONS: These data indicate general acceptance among respondents, but a subset of the population would be opposed to the program. This reinforces the need to broadly and continuously communicate with patients about the program and the ability to exclude a given sample. The effects of prior beliefs would benefit from further exploration.
Authors: S Trent Rosenbloom; Jennifer L Madison; Kyle B Brothers; Erica A Bowton; Ellen Wright Clayton; Bradley A Malin; Dan M Roden; Jill Pulley Journal: J Am Med Inform Assoc Date: 2013-07-25 Impact factor: 4.497
Authors: Jamie L'Heureux; Jeffrey C Murray; Elizabeth Newbury; Laura Shinkunas; Christian M Simon Journal: Biopreserv Biobank Date: 2013-05-29 Impact factor: 2.300
Authors: D M Roden; J M Pulley; M A Basford; G R Bernard; E W Clayton; J R Balser; D R Masys Journal: Clin Pharmacol Ther Date: 2008-05-21 Impact factor: 6.875
Authors: Juli Murphy; Joan Scott; David Kaufman; Gail Geller; Lisa LeRoy; Kathy Hudson Journal: Am J Public Health Date: 2009-10-15 Impact factor: 9.308