Transcript Payments to Research Subjects

Payments to
Research Subjects
Margaret Byrne
Department of Epidemiology and
Public Health
Summary of talk
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Why are incentives used? Do they work?
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Ethical concerns with use of incentives
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Practical concerns with incentives
Why are incentives used?
- individuals believe their time/effort should
be compensated for
- individuals give up work or leisure time to
participate
- procedures might be onerous or
unpleasant
- need compensation to be able to
participate
Do incentives work?
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Yes!
Pre- and post natal medical care
Smoking cessation interventions
Clinical trials
Drug treatment trials/interventions
57-90% cite incentives as the motivating factor to
participate
Ethical issues surrounding incentives
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Positive arguments
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Negative arguments
Positive arguments
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Effectiveness at recruitment – saves time
and money on research
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Helps with retention
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Recruits a more generalizable sample
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Reduces therapeutic misconception
Negative arguments
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Financial incentives are coercive
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Payments should not be used because
they will influence people to participate –
even if not coercive
Financial incentives are coercive
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Coercion necessarily involves a threat
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Incentives for participating are an offer, not
a threat
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Unduly influential?
Other ethical debates
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Individuals sign on to too risky studies
Undue research burden on the poor
Individuals lie about eligibility
Payment “cheapen” goals and integrity of
research
Patients in clinical trials already benefit
Risk of trials
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Payments may “blind” participants to the
risk of the trials
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People are often paid for more to take on
risk
Undue burden on poor
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Not offering financial incentives to poor
when we would offer to wealthier is
paternalistic
Denying individual’s choice/chance to
improve situation
Research shows wealthier are more
influenced by the money
Lie about eligibility
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Possibly true
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Screening procedures should resolve
problem – not banning payments
Payments “cheapen” research
Patients versus healthy subjects
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Argument that being in trial “offers people
desirable therapeutic benefits” so shouldn’t
need to pay
Research should only be done under
conditions of equipoise
Argument reinforces the therapeutic
misconception
Practical issues of using financial
incentives
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How large should the payment be?
Balance of
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Enough to be effective
Not too large so that we are wasting money
Very little research on this
Practical issues of using financial
incentives
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Although not coercive per se, need to take
people’s perceptions and situations into
account
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Too high/ pressure from family
Too low, we may be exploiting participants
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