Abrams and colleagues designed the Genetics Literacy Survey to gather information about how the public understands genomics and applies their knowledge in everyday scenarios beyond medical settings, including in the marketplace and mass media. Aiming to fit the hierarchy of knowledge framework outlined within
E.M. Rogers’ Diffusion of Innovations, the authors created a survey that measures three, scaled dimensions of genetic literacy (term familiarity, practical skills, and factual knowledge).

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 follow up question about paternity testing. The questionnaire assesses how morally acceptable respondents find courses of action by physicians to measure attitudes of the lay public about the conduct of misattributed paternity disclosure.

The PIGSR is a brief instrument that enables adult respondents the ability to express their preferences or opt out of getting secondary results. It is designed to be completed prior to testing without assistance. While initially developed for use in a study in which intellectual disability and related conditions were considered to be primary results, it possible to adapt the PIGSR to other genomic contexts.

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 whether and when to receive their results while maintaining data security and confidentiality. No charge licenses are available to academic and nonprofit research organizations.

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, chromosome, susceptibility, mutation, variation, abnormality, heredity, and sporadic) using a 7-point scale, ranging from strongly agree to strongly disagree with the statement “I am familiar with this term.”

This baseline measure for adults enables the collection of information on sex, age, language, income, education level, insurance status, country of origin, access to care, health literacy, subjective numeracy, race/ethnicity, healthcare system distrust, and quality of life.

This survey for study decliners captures demographic and insurance status information and elicits information about why participants declined to join the study such as privacy concerns, refusal to receive genetic results, etc.

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 they wished to be returned from a multigene sequencing panel. Site-specific protocols in the Supplementary Materials range from brief screeners to decision aids.

The Patient Reported Utility (PRU) of Clinical Sequencing Survey asks participants to rate how useful they find nineteen outcomes of genome sequencing on a scale ranging from 1 (not at all useful) to 7 (extremely useful).

The Patient-Initiated Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, asks adult patients to report whether they took any actions following the return of genetic test results, including making changes to their own or their child's health care, lifestyle, or insurance.