The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
Christensen and colleagues developed a survey to enable parents of pediatric patients to set preferences for return of individual results from research on pediatric biobank samples based on disease
Christensen, K. D., Savage, S. K., Huntington, N. L., Weitzman, E. R., Ziniel, S. I., Bacon, P. L., Cacioppo, C. N., Green, R. C. & Holm, I. A. (2017). Preferences for the return of individual results from research on pediatric biobank samples. Journal of Empirical Research on Human Research Ethics, 12(2), 97-106.
Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures.
Goisauf, M., Martin, G., Bentzen, H. B., Budin-Ljøsne, I., Ursin, L., Durnová, A., Leitsalu, L., Smith, K., Casati, S., Lavitrano, M., Mascalzoni, D., Boeckhout, M., Mayrhofer, M. Th. (2019) Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLoS ONE 14(9): e0221496.
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