December 9, 2016 This symposium brought together a variety of experts to discuss key ethical and legal questions regarding offers of payment to research participants. Panels covered: - Why payment is offered to research participants - Regulatory parameters governing payment - Whether payment to research participants should be considered exceptional, compared to payment in other contexts - How offers of payment affect participants - How to define coercion and undue influence with regard to paying research participants - Which factors should be considered when evaluating proposed payments - The problem of low payment This event was free and open to the public. This event was part of the collaboration between the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Regulatory Foundations, Ethics, and Law Program of Harvard Catalyst | The Harvard Clinical and Translational Science Center at Harvard Medical School. Cosponsored by the MRCT Center of Brigham and Women's Hospital and Harvard. Learn more on our website: http://petrieflom.law.harvard.edu/events/details/paying-research-participants

1. Conor S. O’Brien
Senior Project Manager
Harvard Work Hours,
Health and Safety Group
Sleep Health Institute
Division of Sleep and Circadian Disorders
Departments of Medicine and Neurology
Brigham and Women’s Hospital

2. Investigators
• Charles A. Czeisler, PhD, MD
• Stuart Quan, MD
• Laura K. Barger, PhD
• Matt Weaver, PhD
Research Staff
• Conor O’Brien, Sr. Project Manager
• Salim Qadri, Programmer
• Natalie Viyaran, Research Assistant
Sleep Health Institute
Conducts large scale field research programs which include
sleep health education and sleep disorders screening in
occupational settings
Previous groups worked with include: Firefighters, Police, Astronauts, Air
Marshals, College Students and Physicians.

3. My Personal Story
In 1997 I was a full time musician living in
Maine and I was in need of extra money. I
applied to participate in a month long inpatient
sleep research study at BWH.
Photo by Bob Sasha
National Geographic Magazine

4. Sleep Research Study at BWH
27 day research study looking at
caffeine’s effect on alertness:
 Compensated $2500 to live in a time isolated
environment for 4 weeks
 No contact with the outside world
 No phone, TV or radio use
 No email or visitors
 Lived on a 42 hour day
 Awake in dim light for 29 hours
 In bed in the dark for 14 hours each day cycle
 24/7 IV catheter, scalp and face electrodes

5. Challenges for Research Subjects
 Financial burden and inconvenience
 Travel Costs (gas, parking and tolls)
 Work coverage for time missed
 Child care / elder care
 Multiple visits for unpaid screening tests
 Fear / Psychosocial Consequences
 Confidentiality
 Stress on family
 Concern for time away

6. Healthy Research Subjects
Reasons for participation:
 Financial benefit
 Altruism
 Benefit science in general
 Impact specific diseases
 A general want to give back to society
 May provide an opportunity for a novel
experience
 Can provide the participant with insight
into their personal health

7. Overview of the Current Range of
Healthy Research Payments
Outpatient Studies
 Often give $5- $30 gift cards per online survey
completed
 More extensive studies pay up to $800 per
month for completing daily diaries and for use
of multiple wearable devices and study visits
24/7 - Inpatient Studies
 Pay $200- $300 per day depending on the
level of burden on the participant
 One current 37-day study pays $10,125

8. Some studies of healthy subjects are
deceivingly difficult to recruit for
 The nature of needing healthy subjects can
in fact be the difficult component in studies
of older adults
 There are very few healthy older adults who
can pass the screening criteria
 Most 50 y/o and over who complete lengthy
inpatient studies don’t have full time jobs

9. Are the rates acceptable?
Outpatient Studies?
Inpatient Studies?