Experiences with research including invitations to participate
Experience with informed consent forms and procedures
Relationship with the researchers suggesting enrollment
Factors that influence decision to join: illness, compensation, altruism, personal benefits
Role of funding source, purpose of study, and researcher compensation on decisionmaking
Perception of voluntarism (ability to decline or withdraw, ‘gentle coercion’?)
Perception of anonymity and confidentiality
Impact of participant vulnerabilities
Impact of perceived risks and benefits
Future willingness to join a research study
Information subjects want and need to make informed decisions
Table 1: Core Domains for Key Informant Interviews.
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