The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
Lowe and colleagues developed a questionnaire containing two scenarios in which misattributed paternity is incidentally discovered, possible courses of action for the doctor in each scenario, and a
Lowe, G., Pugh, J., Kahane, G., Corben, L., Lewis, S., Delatycki, M., & Savulescu, J. (2017). How should we deal with misattributed paternity? A survey of lay public attitudes. AJOB Empirical Bioethics, 8(4), 234–242.
The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results.
Brothers, K. B., East, K. M., Kelley, W. V., Wright, M. F., Westbrook, M. J., Rich, C. A., Bowling, K. M., Lose, E. J., Bebin, E. M., Simmons, S., Myers, J. A., Barsh, G., Myers, R. M., Cooper, G. M., Pulley, J. M., Rothstein, M. A., Wright Clayton, E. (2017). Eliciting preferences on secondary findings: the Preferences Instrument for Genomic Secondary Results. Genetics in Medicine, 19, 337-334.
Tabor and colleagues developed My46, a self-guided, web-based information management system for individuals undergoing genetic testing in clinical and research settings, to enable them to choose wh
Tabor, H. K., Jamal, S. M., Yu, J., Crouch, J. M., Shankar, A. G., Dent, K. M., Anderson, N., Miller, D. A., Futral, B. T., Bamshad, M. J. (2017). My46: a Web-based tool for self-guided management of genomic test results in research and clinical settings. Genetics in Medicine, 19, 467-475.
Hooker and colleagues designed the Genetic Literacy and Comprehension (GLAC) measure to assess research participant familiarity with eight commonly used genetic terms and concepts (genetic, chromos
CSER Phase 2 Provider Return of Results Follow-up #1 Survey is administered 0-6 weeks post-return of results to providers of research participants that were returned positive, negative, VUS, and se
CSER Phase 2 Provider Return of Results Follow-up #2 Survey is administered at 5-7 months post-return of results, regardless of whether the provider has completed the CSER Phase 2 Provider Return o
Several study sites in the third phase of the electronic MEdical Records and GEnomics (eMERGE) Network implemented protocols to enable research participants to choose the type of secondary results
Hoell, C., Wynn, J., Rasmussen, L.V., Marsolo, K., Aufox, S. A., Connoly, J. J., Freimuth, R. R., Kochan, D., Hakonarson, H., Harr, M., Holm, I. A., Kullo, I., Lammers, P. E., Leppig, K. A., Leslie, N., Myers, M. F., Sharp, R. D., Smith, M. E., Prows, C. A. (2020). Participant choices for return of genomic results in the eMERGE Network. Genet Med, 22, 1821–1829.
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.