Table 1 Interview topics and illustrative questions
From: Motives of contributing personal data for health research: (non-)participation in a Dutch biobank
Topic | Example questions |
|---|---|
Association with biobank | How did you get involved? |
Decision of (non-)participation | What were your considerations? |
Reality | Was your experience as expected or not? |
Future | Will you participate in Lifelines or in another centralised large-scale research project in the future? |
Overall perception | How is participation in Lifelines perceived in general? |
Tasks | How are the tasks related to participation in Lifelines perceived? |
Feedback | What do you think of the feedback on your data you (would) receive? |
Outcome hoped for | What motivates individuals to participate? |
Benefits | What are the benefits and opportunities relating to participation? |
Disadvantages | What are the risks and disadvantages relating to participation? |
Definition | What are centralised large-scale data repositories? |
Attitudes towards large-scale centralised data repositories | Are the public’s attitudes towards collection, linking and use of this data generally positive or negative? |
Benefits of large-scale centralised data repositories | What are the benefits of collecting, linking and using data? |
Risks posed by large-scale centralised data repository | What risks are posed by the collection, linking and use of data? |
Personal balance of benefits and threats | From your personal perspective, how are these considerations balanced? |
Societal balance of benefits and threats | From a societal perspective, how are these considerations balanced? |