The University of Miami's Clinical & Translational Science Institute runs a seminar course for MS students.
This talk surveys 8 citizen science projects, reviews NIH's current activities, and identifies issues for attention, particularly with ethical, legal and social implications.
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Univ of Miami CTSI: Citizen science seminar; Oct 2014
1. Citizen Science: Building REALLY
Large Teams to Get Research Done
or
<…with apologies to Pirandello…>
8 short stories in search of authority
Richard J. Bookman, PhD
rbookman@miami.edu
@rbookman
Oct 8, 2014
UM CTSI Seminar Series
7. Science is the belief in
the ignorance of experts.
Richard Feynman,
“What is Science?”,
address to science teachers, 1966
http://img.youtube.com/vi/_ah7f-1M2Sg/hqdefault.jpg
8. Crowdsourcing is not new
“The greatest improvements…have been the
effects of the division of labor.”
Adam Smith,
Wealth of Nations, 1776
31. Game Players Contribute to Research
• Games are an effective interface enabling non-experts to work on
scientific problems
• Game Players working alone or together can solve puzzles that
algorithms (and experts) cannot.
• In aggregate, performance measures of non-experts can meet/exceed
experts
• Games can be used to train algorithms to work better
couchj@mail.nih.gov
40. Abstract
Patients with serious diseases may experiment with drugs
that have not received regulatory approval. Online patient
communities structured around quantitative outcome data
have the potential to provide an observational environment
to monitor such drug usage and its consequences. Here
we describe an analysis of data reported on the website
PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS)
who experimented with lithium carbonate treatment.
To reduce potential bias owing to lack of randomization, we
developed an algorithm to match 149 treated patients to multiple
controls (447 total) based on the progression of their disease course.
At 12 months after treatment, we found no effect of lithium on
disease progression. Although observational studies using unblinded
data are not a substitute for double- blind randomized control trials,
this study reached the same conclusion as subsequent randomized
trials,
http://www.nature.com/nbt/journal/v29/n5/pdf/nbt.1837.pdf
41. And what if the science is about
citizen health?
“What I’ve found to be most amazing about these
forums thus far is the ability of patients to identify
common side effects, formulate solutions, test
them, and confirm their general efficacy all in a
matter of days, when it would take researchers
weeks or even months to generate the same
knowledge.”—
Patient with ALS discussing potential treatments on
the forum of the ALS Therapy Development Institute
47. Citizen Science Working Group
Chair: Dinah Singer, Ph.D. Director, Division of Cancer Biology
Coordinators: Jennifer Couch, Ph.D., Elizabeth Gillanders, Ph.D. & Steve Becker, Ph.D.
Members
Stephanie Archer, Ph.D.
Clinical Trials Specialist
Pregnancy & Perinatology Branch
The Eunice Kennedy Shriver National
Institute of Child Health and Human
Development (NICHD)
Vivien Bonazzi, Ph.D.
Program Director
Division of Genome Sciences
National Human Genome Research
Institute (NHGRI)
Olga Brazhnik, Ph.D.
Computer Scientist
Division of Biomedical Technology
National Center for Advancing
Translational Science (NCATS)
Robin Brown, M.S.
Program Associate Director
Division of Cancer Biology
National Cancer Institute (NCI)
Charlisse Caga-Anan, J.D.
Program Director
Division of Cancer Control and
Population Sciences
National Cancer Institute (NCI)
Vinod Charles, Ph.D.
Scientific Review Officer
Division of Extramural Activities
National Institute of Mental Health (NIMH)
Richard Conroy, Ph.D.
Program Director
Division of Applied Science and Technology
National Institute of Biomedical Imaging and
Bioengineering (NIBIB)
Christina Daulton
Educational Outreach Specialist
Division of Policy, Communications, and
Education Staff
National Human Genome Research Institute
(NHGRI)
Allen Dearry, Ph.D.
Director
Office of Scientific Information Management
National Institute of Environmental Health
Sciences (NIEHS)
Leslie Derr, Ph.D.
Program Director
NIH Common Fund in the Office of Strategic
Coordination
Office of the Director, National Institutes of
Health
Triesta Fowler-Lee, M.D.
Medical Officer
Public Information and
Communications Branch
National Institute of Child Health and
Human Development (NICHD)
Gregg Furie, M.D., M.H.S.
Health Scientist
Office of Behavioral and Social
Sciences Research
Office of the Director, National
Institutes of Health
Jean McEwen, J.D., Ph.D.
Program Director
Division of Genomics and Society
National Human Genome Research
Institute (NHGRI)
Lita Proctor, Ph.D.
Program Director
Division of Genome Sciences
National Human Genome Research
Institute (NHGRI)
Krystyna Rys-Sikora, Ph.D.
Director
Kidney Acute Injury Basic and
Chronic Kidney Disease Basic
Programs
Director, Kidney T32 Program
National Institute of Diabetes and
Digestive and Kidney Diseases
(NIDDK)
Yasaman Shirazi, Ph.D.
Chief
Scientific Review Branch
National Institute of Dental and
Craniofacial Research (NIDCR)
Carol Weil, J.D.
Program Director
Ethical and Regulatory Affairs
National Cancer Institute Cancer
Diagnosis Program
National Cancer Institute (NCI)
48. Citizen Science Consortium
Citizen
Science
Resource
Centers
Data
Science
Center
ELSI
Challenge
Resource
Center
Games
Data Contribution
& Collection
Data analysis
Coordinating
Center
NIH Citizen Science Interest Group
External Advisory Board
Deliverables
•
•
•
•
Rigorously tested
methods validated on
biomedical research
questions
Best practices: an
understanding of which
approaches work best for
categories of research
questions
Clearinghouse:
dissemination of citizen
science opportunities and
methods.
Evaluation criteria for
citizen science methods
in biomedical research
http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf
49. •
•
•
•
•
•
What We’ve Learned- Challenges
Citizen Science methodologies are new to biomedical research.
Current biomedical research policies, regulations and practices were not
designed for Citizen Science methods.
The creation of flexible infrastructure and governance models that enable
multiple levels of participation while maintaining data security, integrity, and
scientific rigor is essential.
Methods need to be developed/adapted and rigorously tested in biomedical
research so we know what works and doesn’t work.
Dissemination of tools, best practices, and training resources will be important
for researchers and citizens to use citizen science methods effectively.
Evaluation criteria for Citizen Science approach to biomedical research needs
to be developed.
http://dpcpsi.nih.gov/sites/default/files/Citizen_Science_presentation_to_CoC_Jan31.pdf
59. Ethical, Legal and Social
Implications
• Virtual sweatshop
• IP
• Misrepresentation of task
• Repression 2.0
• Disruptive participants
60. Ethical, Legal and Social
Implications
Some solutions
• Trusted platforms
• Open algorithms
• Consent to play/participate
• Identity Verification
• Credit or badge system
Provide outline of talk:
Intro – incl some historical background & perspective.
Tell 8 stories about 8 different citizen projects, emphasizing special features of each,
these are all filled with exciting potential…
then consider NIH’s views and current plans around citizen science
then discuss some challenges and limitations.
OVERALL GOAL:
Hope to help you think about how you might use citizen science approaches in your own research.
Physics knows a lot of building large teams
Here’s a big team in science….just 1 of the instruments at the LHC
But this isn’t a big team, by the standards of citizen science.
https://library.uthsc.edu/exhibits/stamps/physicians.htm – mendel
http://pballew.blogspot.com/2011/11/on-this-day-in-math-nov-9.html - newton
http://rainbowstampclub.blogspot.com/2009/02/new-stamp-on-darwin-from-italy.html - Darwin
http://www.philatelia.net/classik/stamps/?id=12787 – Aristotle
So how much labor is out there…available for science?
Mention amazon mechanical turk
2007.
In 7 months, 900,000 galaxies classified….through 50 million classifications.
Hanny Van Arkel, a dutch school teacher……
Give peas a chance
The PeasCorps
Shift to Polymath
Now start stories in life sciences and biomedical research
Start w/ cancer and biopsy specimens – cell slider
Shift to eyewire
Shift to foldit
David Baker, UWash, Zoran Popovic
Rosetta@Home, modeled after SETI@Home – a screensaver.
Then got feedback from people staring at their screensavers with suggestions.
In 4 months, 50,000 users. After 1 year, 200,000.
Includes new algorithm development…and a PNAS paper with gamer authors.
EBOLA
Shift to patients like me
Combine the chat rooms of the 80’s and 90’s with a structured data approach to documenting health.
Started in 2004; then ALS goes live in 2006.
PRO = patient reported outcomes
uBiome…..searchable database
It’s all so cool and disruptive and innovative and news-making and amazing and …….
