Table.

How the subjects in a phase I gene transfer study for Parkinson’s disease talk about their motivations, understanding, and other influences on their decision to participate.

Subject	Motivation for Participation	Understanding of Purpose of Study	Perception of Benefit and Other Influences on Decision to Participate	Relationship Between Motivation and Understanding of Purpose
1	Dual motivation	To test safety	- Trust in neurosurgeon - Denies researchers made specific    statements indicating participants would    benefit - Intuitive feeling - Hope and optimism	Dual motivation allows reconciliation: Understood purpose (safety) but still hoped for benefit.
2	Benefit to self	To test safety	- Previous subjects doing OK - Hope and optimism - Denies researchers made specific    statements indicating participants would    benefit	Chance worth taking: “It’s like throwing the Hail Mary pass…”
3	Benefit to self	To test safety To test efficacy (For future PD patients)	- Previous subjects doing OK - Positive media portrayal - Hope and optimism	Chance worth taking: “I mean I was willing, you know, to try it anyway.”
4	Benefit to self	To test safety To test efficacy (For future PD patients)	- Denies researchers made specific    statements indicating participants    would benefit - Allure of gene transfer technology - Intuitive feeling - Hope and optimism - Trust in research team	Chance worth taking: “There wasn’t much to lose.”
5	Benefit to self	To test efficacy (For future PD patients).	- Previous subjects doing OK - Positive tone of informed consent    discussion - Denies researchers made specific    statements indicating participants would    benefit - Science behind the trial: “the results in the    lab with monkeys”; “the preparation that    they had gone through”	Chance worth taking.
6	Altruism	To test safety	- Science behind the trial: “the theory    behind the procedure.” - Denies researchers made specific    statements indicating participants would    benefit - Trust in neurosurgeon - Hope and optimism	Motivation is congruent with the objective purpose of the study.
7	Benefit to self	Failed to appreciate the purpose.	- Influence of previously enrolled subject in    GAD study - Trust in neurosurgeon - Positive tone of informed consent    discussion - Denies researchers made specific    statements indicating participants would    benefit - Previous subjects doing OK - Hope and optimism - Positive media portrayal of gene therapy	Did not care to understand the purpose at the beginning: “…I really don’t remember thinking about what they were trying to accomplish as much as how it was going to affect me.”
8	Dual motivation	To test safety To test efficacy (For future PD patients.)	- Trust in neurosurgeon - Denies researchers made specific    statements indicating participants would    benefit - Scientific reasons: S8 was later in the study    so got “more of the gene” - Hope and optimism - Previous subjects doing OK	Dual motivation allows reconciliation between motivation and understanding of purpose: “If it benefits me, that’s a bonus.”