Table 1 Data collection
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 | ||