The Research Tools database facilitates access to commonly used instruments for empirical ELSI scholarship.
CSER Phase 1: Informed Consent Form and HIPAA Authorization - PediSeq: The Pediatric Genetic Sequencing Project
The purpose of PediSeq: The Pediatric Genetic Sequencing Project was to identify best practices for educating patients about exome and genome sequencing, determining the sequencing data relevent to
This informed consent document for parents and minors in the Genomic Diagnosis in Children with Developmental Delay study includes standard consent language plus consent to storage of specimens for
CSER Phase 1: Assent Form: (Ages 7-14) 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 7 - 14 year old relatives of NCGENES study participants with a genetic test
CSER Phase 1: Baylor Advancing Sequencing into Childhood Cancer Care (BASIC3) Germline Sequencing Form
This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results.
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.