Research Tools

Kenen and Preters designed the Colored Ecological and Genetic Relational Map (CEGRM), a pictoral map used to organize information about client relationships with biological and non-biological kin, for use in genetic counselling research with members of families with suspected risk of cancer or late-onset inherited disorders. Three relationship categories are included in a CEGRM including: 1) "information" or people with whom the client shares genetic and health information, 2) "service" or people who facilitate the client's genetic counseling appointment, and 3) "emotions" or people with whom clients would share their feelings about familial cancer risk or whose feelings they would consider when deciding to go for counseling or testing. Genetic counsellors can direct clients to construct a CEGRM or construct it themselves using information provided by clients.

Peshkin and colleagues developed and tested the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS) to assess parental attitudes about and interest in testing their minor children for BRCA 1/2 mutations, which have been linked to breast and/or ovarian cancer risk. Item development was based on literature review and the research and counseling experiences of the authors. This 11-item instrument may be integrated into genetic counseling research or used to identify subgroups of parents who are highly motivated to have their children tested.

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 post-return of genetic test results survey assesses the psychosocial impact of receiving genomic findings by measuring how much participants had specific feelings such as anxiousness, nervousness, uncertainty, etc, in the past week.