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.

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.

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

This baseline measure for parents 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, child health (visual analog scale), and PedsQL for quality of life measurement.

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.

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.

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.”

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.

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.

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).