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Table 1 Data collection

From: Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

Intervention: genetics and insurance moratorium
Actor Context Mechanisms Outcome measures Objectives Data collection methods
1. Consumers Consumer knowledge of moratorium Widespread community promotion of the moratorium Knowledge of existence of moratorium and accurate understanding of its terms 1.1 General population survey
Genetic testers survey
Pre-testers and decliners survey
Consumer experiences Adequate consumer protection is implemented
Regulations are complied with
Increased uptake of genetic testing or reduction in delay
Less distress/confusion about insurance and genetics for those testing and tested
Fewer reports of adverse insurance events based on genetic data
1.2, 1.3
2. Health Professionals (HPs) HPs’ knowledge of moratorium Promotion of the features of the moratorium to HPs
Guidelines/processes to assist HPs to communicate with patients
Accurate knowledge of moratorium terms
Confidence with explaining moratorium to patients
2.1 Health professionals survey
HPs’ experience of patient attitudes and behaviours Adequate consumer protection is implemented
Dissemination of existence and terms of moratorium to patients
HP reports of increased uptake of genetic testing and reduced delays to testing
Less distress/confusion about insurance and genetics for these testing and tested
2.2
HPs’ views on regulation Adequate consumer protection is implemented HP reports that regulation is adequate to protect patients 2.3
3. Financial industry Financial industry knowledge/ understanding of moratorium Industry engagement and dissemination Accurate understanding of moratorium terms 4.1 Financial advisor survey
FSC member survey
Financial industry implementation Adjusted industry standards and processes Accurate and complete recording of all instances of receiving genetic information into FSC database
Reduced rate of receipt of genetic test results
Reduced occurrences of adverse insurance events based on genetic test results
Industry forms and processes reflect the terms of moratorium
4.2, 4.3 Analysis of industry database
Application form analysis
FSC Underwriters interviews or focus groups
4. Genetic research community Researchers’ and research participants’ awareness of moratorium Updated HREC guidelines, templates for direct communication to research participants Increased clarity for researchers and participants, easier communication 3.1, 3.2 Researcher interviews
Research participants’ behaviour Adequate consumer protection is implemented Reduced number of insurance concerns
Reduced rate of research decliners due to insurance concerns
3.2