Research Tools

Goisef and colleagues developed a survey for professionals working in research-based biobanks in Europe that assess their satisfaction with current ELSI-related procedures. Topics assessed include: collaboration and data sharing with industrial partners, secondary uses of participant data, and recontacting participants. There are 25 questions in this survey.

Rose and colleagues developed a 10-item scale to measure distrust of the United States healthcare system (defined as hospitals, health insurance companies, and medical research) for use in the investigation of its prevalence, causes, and effects.

Ware and colleagues developed the SF-12, a shortened version of the 36-item short-form (SF-36) health survey, to measure physical and mental health in studies with large samples or constraints on questionnaire length.

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.

The Follow Through on Medical Actions Attributable to Genomic Testing Survey, developed by the Clinical Utility, Health Economics, and Policy (CUHEP) working group, measures whether parents of pediatric patients took actions (such as sharing the results with healthcare providers) after receiving positive or negative findings on their child's genetic test.

The Making Improvements in Hospital Care Survey is a 32-item survey instrument designed to measure patient preferences for consent to non-invasive, quality improvement interventions in the hospital setting.

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 Genetic Essentialism Scale for Race (GESR) measures beliefs about the relationship between genes and race with 15 items. Please see Table 1 of linked article by Yaylacı and colleagues for complete list of survey items. Participant responses are recorded on a five-point Likert scale (“Strongly Disagree” to “Strongly Agree” or “Don’t Know”).