The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
Chew and colleagues developed and tested three brief screening questions for health literacy scored on a Likert scale.
- Chew, L. D., Griffin, J. M., Partin, M. R., Noorbaloochi, S., Grill, J. P., Snyder, A., Bradley, Katharine A., Nugent, S. M., Baines, A. D., VanRyn, M. (2008). Validation of screening questions for limited health literacy in a large VA outpatient population. Journal of general internal medicine, 23(5), 561-566.
Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures.
Rose and colleagues developed a 10-item scale to measure distrust of the United States healthcare system (defined as hospitals, health insurance companies, and medical research) for use in the inve
- Rose, A., Peters, N., Shea, J. A., & Armstrong, K. (2004). Development and testing of the health care system distrust scale. Journal of general internal medicine, 19(1), 57-63.
- Shea, J. A., Micco, E., Dean, L. T., McMurphy, S., Schwartz, J. S., & Armstrong, K. (2008). Development of a revised Health Care System Distrust scale. J Gen Intern Med., 23(6), 727–732.
Ware and colleagues developed the SF-12, a shortened version of the 36-item short-form (SF-36) health survey, to measure physical and mental health in studies with large samples or constraints on q
- Ware Jr., J. E., Kosinski, M., Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical care, 34(3), 220-233.
The Patient Reported Utility (PRU) of Clinical Sequencing Survey asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful)
The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether th
The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pedi
The Making Improvements in Hospital Care Survey is a 32-item survey instrument designed to measure patient preferences for consent to non-invasive, quality improvement interventions in the hospital
- Kaplan, S. H., Gombosev, A., Fireman, S., Sabin, J., Heim, L., Shimelman, L., Kaganov, R., Osann, K., Tjoa, T. & Huang, S. S. (2016). The patient's perspective on the need for informed consent for minimal risk studies: Development of a survey-based measure. AJOB Empirical Bioethics, 7(2), 116-124.
Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related
- Mountcastle-Shah, E., Tambor, E., Bernhardt, B. A., Geller, G., Karaliukas, R., Rodgers, J. E., & Holtzman, N. A. (2003). Assessing mass media reporting of disease-related genetic discoveries: Development of an instrument and initial findings. Science Communication, 24(4), 458-478.
The Genetic Literacy Fast Test (GeneLiFT) is a self-administered genetic literacy test for individuals who intend to undergo genetic screening with return of results.
- Rasouly, M. H., Cuneo, N., Marasa, M., DeMaria, N., Chatterjee, D., Thompson, J. J., Fasel, D. A., Wynn, J., Chung, W., Appelbaum, P., Weng, C., Bakken, S., & Gharavi, A. G. (2020). GeneLiFT: A novel test to facilitate rapid screening of genetic literacy in a diverse population undergoing genetic testing. Journal of Genetic Counseling, 00, 1–13.