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 patients, and returning results. This informed consent form and HIPAA authorization is appropriate for use with parents of study participants and children capable to providing assent. It contains consent to future analyses of test results, use of data or specimens for future research, future contact, and photgraphs, in addition to consent to study participation.

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 future use, to be contacted about new research studies, and to share genetic and health information in the dbGaP database.

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 result containing a variant of uncertain significance (VUS). This assent is for the relative to be tested for the VUS previously identified in the NCGENES study participant, not enrollment in the full NCGENES study.

This form is for physicians to record demographic and clinical information about a patient to facilitate laboratory interpretation of whole exome sequencing results. It also records family history of cancer and physician choice about receipt of carrier status information for autosomal recessive conditions.

This semi-structured interview guide is intended for use with gene drive technology (GDT) experts. It was developed using ethical arguments identified by the authors via literature review. It employs open-ended questions on several GDT topics such as: benefits, risks, stakeholder involvement, and governance.

This focus group guide assesses the perspectives of IRB professionals toward research on medical practices within usual care. It was utilized in the ROMP study for focus groups conducted for the purposes of developing and refining a survey instrument for the same population. The survey is also available in this database.

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 secondary findings. It assesses provider experience with genetics, confidence in patient communication and care management, perceived utility of genomic test result for the patient's care, demographic information, and provider recommendations based on the genetic test result.

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 of Results Follow-up #1 Survey. The Follow-up #2 Survey captures provider healthcare actions (screenings, procedures, drugs, and referrals) and recommendations.

This physician consent form was approved by the Institutional Review Board for the Baylor College of Medicine and Affiliated Hospitals for use in the Incorporation of Genomic Sequencing into Pediatric Cancer Care Study. The purpose of the study was learn how to report and use clinical exome sequencing test results for childhood cancer patients.

The purpose of the MedSeq Project was to develop a process for a process for integrating information obtained from whole genome sequencing into clinical practice and to explore how physicians and their patients understand and utilize this information. This consent for primary care physicians provides information on the purpose of the study, study procedures, risks and possible benefits of particpating, payment, contact information for questions or concerns, and privacy protections.