Instrument for assessing mass media reporting of disease-related genetic discoveries is a 38-item tool for evaluating the quality and balance of media stories reporting genetic discoveries related to human disease.

The study brochure for the North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES) study includes information on what whole exome sequencing is, why the study is being conducted, who can join, the health problems studied, how many participants can join, and what participants will be asked to do.

The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), describes Whole Exome Sequencing (WES) and six types of non-medically actionable incidental information that might be returned to NCGENES participants. This information is designed to help patients make an informed decision about whether or not to learn non-medically actionable incidental information that could be uncovered during whole exome sequencing.

The brochure, developed by North Carolina Genomic Evaluation by Next-generation Exome Sequencing (NCGENES), includes information about whole exome sequencing (WES), the three types of incidental information revealed by WES (medically actionable, not medically actionable, and no known medical value), and how NCGENES will allocate participants into groups to study two return of results decision interventions.

This published study protocol for the MedSeq trials includes a description of the study design; recruitment, enrollment, and sample size plan; patient exclusion/inclusion criteria; and process of interpreting WGS results and delivering them to physicians. It also includes an example of a general genome report as well as a cardiac risk report.

This document is the Use of Sequencing to Guide the Care of Cancer Patients study protocol. Appendices include the following: Measures for Patient Baseline, Email Notification to Patients to Complete Baseline Survey, Measures for Patient Post-Disclosure Survey in the Setting of Uninformative Sequencing Results, Measures for Patient Post-Disclosure Survey in the Setting of Informative Sequencing Results, Training plan for CRCs, Patient Baseline Reminder Letter, Patient Post-Disclosure Email Invitation and reminder email, Patient Post-Disclosure Reminder invitation and reminder letter, CanSeq Patient Informed Consent Interview Guide, Patient Information brochure, Post-Disclosure email introduction, ACMG Guidelines, Patient Preferences Communication, Gift Card Thank You Letter, and Patient Post-Disclosure Interview.

The Personalized Oncology Through High-throughput Sequencing: MI-ONCOSEQ (Michigan Oncology Sequencing Center) (formerly known as “Personalized Medicine Based on Molecular Profiling of Patients with Cancer”) study implements a mechanism for patients who have advanced or refractory cancer to undergo tumor sequencing, sequence analysis, and return of clinically significant sequence results to patients, their families and the clinicians. This document is the revised study protocol. It contains 5 appendices: 1. Study Calendar; 2. Sample Molecular Report; 3. Adverse Event Reporting Form; 4. Genes Queried; 5. Genetic Information Nondiscrimination Act.