Download - Lurie childrens wilbanks 2017
Promote OPEN SYSTEMS, INCENTIVES, and NORMS to redefine how complex biological data is GATHERED,
SHARED, AND USED.
1.
weird times for privacy and research.
“my car knows i listen to my wife’s playlist”
what’s benefit? what’s harm?
how do we know?
what’s benefit? what’s harm?
how do we know?
what happens if we import toxic ethics from tech to health?
what happens if we import “the commons”from tech to health?
2.
cloud and “network science” are tidal forces.
we see three pillars to modern scientific methods
Open Science
Team Science
Participant centered Science
pilot approaches to create open systems, incentives, and norms
Open Science
Team Science
Participant centered Science
Pilot Systems and Approaches
build infrastructure to provide robust, reusable solutions
Open Science
Team Science
Participant centered Science
Pilot Systems and Approaches
Infrastructure
Open Science
Team Science
Participant centered Science
Pilot Systems and Approaches
Infrastructure
support research communitiesthat operate under these principles
3.
the technology wave is building.
“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…”
high-dimensional data
62yoldMan 67yoldWoman
same medicine, different impacts
tapping number shows effects of medication and daily variation
50
75
100
125
150
date
y
−1.0
−0.5
0.0
0.5
1.0sign(delta)
sharing personal
thoughts on day-to-day
changes
4.
issues and opportunities in e-consent
social pressures that increase rates of “yes” disappear…
comprehensionlanguagetimeformat
regulatoryliability
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. Additional funding came from the Robert Wood Johnson Foundation and the Helmsley Charitable Trust, and essential support from the Electronic Data Methods Forum at Academy Health.
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
your clinical protocol is going to be clearly
exposed.
initial metaphor
38
screen structure
navigation to/from reinforces concept
study “narrative”
summative / formative assessments of comprehension and informedness
changeable by participant
identity test
data use statement
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
participants and public get to see the users / uses.
iconographic representations of key concepts in informed consent
open source methods
design layouts
workflows
web templates and assets
100,000+ enrolled in Sage-supported studies since March 2015
26 known studies using methods
integrated into Apple ResearchKit
5.
where is this all going?
http://ascopubs.org/doi/abs/10.1200/JCO.2012.45.4553
RK approach + video
chat and video
• reformat visual content into a chat UI and let participants interact via Q&A
• possible to implement via SMS as well
• reformat visual content into longer form video
DNA sequencing and results return are different from sensors and surveys - have
to teach and assess higher risk, uncertainty, unknowables…
Identifiability Knowable harms Unknown unknowns
wacky ideas
interaction required
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?
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)
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)
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.
