This presentation was provided by John Wilbanks of Sage Bionetworks, during the NISO Symposium, Privacy Implications of Research Data held on September 11, 2016 in conjunction with International Data Week in Denver, Colorado

1. Can We Simultaneously Support Both
Privacy and Research?

3. 1.
neither privacy nor research are stable
concepts, especially right now.

5. “my car knows i listen to my wife’s playlist”

10. what happens if we import toxic ethics
from tech to health?

12. https://xkcd.com/1390/

13. the funders are changing the rules

14. the funders are changing the rules

15. the funders are changing the rules

18. helps labs work together,
when they don’t work
together.

19. https://www.synapse.org/#!
StandaloneWiki:ResearchCommunities
AMP-AD
m2ove-AD
Common Mind
Progenitor Cell Biology
Colorectal Cancer Subtype
TCGA
Synodos
PsychENCODE

21. Can We Simultaneously Support Both
Privacy and Research?

22. 2.
research processes can be both
innovative and privacy protecting.

25. “Investigators will meet annually in-person
with each participant to assess and record
progression … every six months, the team will
conduct phone and mail surveys regarding
diagnosis, medications, and other impacts of
the disease…”

27. high-dimensional data

28. 62 y old Man 67 y old Woman
same medicine, different impacts

29. tapping number shows effects of medication
and daily variation
50
75
100
125
150
date
y

30. sharing
personal
thoughts on
day-to-day
changes

31. what makes people feel better
Exercise Walking Sleep Work

32. what makes people feel worse
Lack of Sleep MoodPain

33. what you don’t collect is
as important as what you
do collect.

34. unless you really need latitude and longitude, display
good taste, and don’t collect it.
where i’ve been,
where i’m going

35. 3.
informed consent is an opportunity, not a
burden to be endured.

36. how do we consent this kind of
study only through a phone?
(funded by Robert Wood Johnson Foundation, 2013)

37. informed consent must be a true design priority, not a
bureaucratic exercise.

38. comprehension
language
time
format
regulatory
liability

39. 1. “technical debt” means traditional
(non-mobile) consent has known
problems, but hard to change.
2. signs of support for new methods of
using technology as pedagogy in
consent
This project was supported by grant number U18HS022789 from the Agency for Healthcare
Research and Quality. The content is solely the responsibility of the authors and does not
necessarily represent the official views of the Agency of Healthcare Research and Quality.

41. 1. tiered information access by
participants
2. “pictorial” dominant on first
information tier
3. text dominant on second information
tier
4. require perfect score on short
assessment

44. initial metaphor

45. 45

46. screen structure

49. study “narrative”

50. privacy isn’t just the elimination of risk of
identification.
it’s about letting people make educated
choices about the risks and benefits with
which they are comfortable.

51. if the pictographs teach “what we know”
then we also must assess if someone
learned it!

52. “participant centric
consent toolkit”
http://sagebase.org/pcc

54. iconographic
representations of
key concepts
in informed
consent
open source methods

56. design layouts

57. workflows

58. web templates and assets

59. 4.
put the people in charge of sharing
decisions.

60. >88,000 enrolled in Sage-supported
studies since 9 March 2015
(~75% choose to share broadly)

61. changeable by participant

64. identity test
data use statement

65. I WILL CREDIT
PARTICIPANTS
To complete this form:
1. Enter your name (see *)
2. Mark your initials on the line in the upper right corner of each box (9 times, total)
3. Sign and date
I, _____________________*, reaffirm my commitment to the
Synapse Awareness and Ethics Pledge. I will adhere to the
following principles for responsible research:
__________________________ * Printed name
__________________________ Signature
__________________________ Date
I WILL NOT
RE-IDENTIFY
___
I WILL NOT
SHARE
___
I WILL NOT USE
FOR ADVERTISING
___
I WILL KEEP
SECURE
___
___
I WILL PUBLISH
OPEN ACCESS
___
___
I WILL PROTECT
PRIVACY
I WILL REPORT
ANY BREACHES
___
___
I WILL FOLLOW
THE LAW

66. participants and public get to see
the users / uses.

69. 5.
skate to where the puck is going.

70. good for teaching and
assessing “what we
know” in low-risk context

71. EHRs and DNA are different from sensors
and surveys - have to teach and assess
higher risk, uncertainty, unknowables…
Identifiability Knowable harms Unknown unknowns

72. “Known Knowns”
• Trolling
• Doxing
• Bullying file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.pngIf a bully connects your
data to your name, they
might publish it.
Trolling
next
learn more

73. Extraction
• Where does the
data come from?
• Requirements
and limits of
your
authorization for
extraction
• Do we do
anything to it
before transfer?
file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.png
You’ll give us permission
to make a copy of your
EHR data, which will go
into your study data.
Permission to Copy
next
learn more

74. Transfer
• What state is
the data in
during
transfer?
– Anonymized
– De-identified
– Pseudonymized
• Where does the
data travel to?
file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.pngYour data will be
“encrypted” to keep it safe
as it moves into the study.
Safe Transfer
next
learn more

75. Risks
• Limits to anonymization/
de-identification/
pseudonymizaiton
• Risk of sharing/discovery
– “Asymptomatic” or “pre-
clinical” conditions
– Non-paternity
– Mental health
– Sexual health
• Risks extend to family
members
file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.png
Because your data is
unique to you, it will be
hard to “anonymize” it
completely.
Identity
next
learn more

76. Benefits
• Free (?)
electronic copy
of part/all of
EMR
• Portability /
continuity of
care
file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.pngYou can take your data
wherever you want, for
whatever reasons you
want.
It’s your data
next
learn more

77. Issues to consider
• Recapitulate
HIPAA/GINA:
– Insurance (life,
long term) and
financial planning
– Military
– Small companies
• Cost of storage/
download of data
(if participant
gets/has access to
copy)
file:///var/folders/9p/
bbpc5fkd6ybdzwss43hcfz
sc0000gn/T/
noun_dna_77921.pngEmployers and health
insurance can’t use this
data to discriminate
against you.
Your rights
next
learn more

78. always search for inspiration.

79. wacky ideas
interaction required

80. the sorting hat
• Automatic sorting, no work required
• Consent process that could “bin”
participants into likely risk and consent
them in specific tracks
• Suggested for projects that involve consent
of known sequences for which risk could
be computed (i.e. at Broad etc) but
interesting conceptually - what are the bins
that could be used for sorting?

81. ballot box
• Manual selection and movement of choices
• Consent process where participant is faced with multiple
statements and has to “vote” with them, with an interpretation of
sorts provided at the end
• I.e. place seven statements on the screen about the study, let
participant sort them into “things that make me more / less likely
to want to enroll”
• I.e. ask seven binary questions about the study, display results
with commentary “i think i am unlikely to be a victim of genetic
discrimination”
• Suggested for projects where there isn’t a lot of real estate (mobile)
but also for where there isn’t a lot of risk (perhaps not sharing
broadly)

82. colossal cave adventure
• Interactive, quiz-based game where wrong answers
receive immediate correction, has an endpoint / finish
line
• Consent process where participant must “find their
way” through a moderately easy puzzle
• I.e. contextualize a risk such as long-term care
insurance - before “share genome” should correctly
choose “i thought about long term care insurance”
• Suggested for projects where there isn’t a lot of real
estate (mobile) but where there is medium risk
(perhaps sharing broadly inside Sage style
approaches)

83. kobayashi maru
• From Star Trek: “The objective of the test
is not for the cadet to outfight or outplan
the opponent but rather to force the
cadet into a no-win situation and
observe how he/she reacts.’
• Consent process where participant must
engage with ambiguity of DNA risk and
benefit through scripted situation(s)
• Put a set of unanswerable questions
about the risks and benefits of
genome research use, donation and
sharing together - but make sure
there are no “right” answers.

85. Can We Simultaneously Support Both
Privacy and Research?

86. it’s possible. but it’s only possible if we make it
part of the purpose of research.

87. thank you!
john.wilbanks@sagebase.org
http://sagebase.org/platforms/governance
@wilbanks