The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
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.
CSER Phase 1: Adult/parent consent with assent form - Personalized Medicine Based on Molecular Profiling of Patients with Cancer
This consent/ assent form for adults, adolescents, and parents of minors in the Personalized Medicine Based on Molecular Profiling of Patients with Cancer study includes consent to the use of tumor
CSER Phase 1: Assent Form: (Ages 15-17) Relatives of a Study Subjects - NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis and Research
This assent form from the NCGENES: A Next-Generation Sequencing Platform for Genetic Diagnosis study is designed for the adolescent (aged 15-17) relatives of NCGENES study participants with a genet