[bestbits] Informed Consent, Post-Snowden @wilbanks

[Carolina Rossini]

http://del-fi.org/post/101425506916/informed-consent-post-snowden


Informed Consent, Post-Snowden
<http://del-fi.org/post/101425506916/informed-consent-post-snowden>

We blew our chance to build a data world that truly empowers individuals
already with consumer data and surveillance. We screwed it up well and
good. We let the argument be that functionality - features, free stuff - is
a solid, ethical, and most of all,*normal* trade for data that describes us
in intimate detail. We let the companies that create that functionality use
that intimate detail to sift our mail for us, to recommend sweaters to us,
to share with the surveillance state and watch us.

But we haven’t yet blown that chance with health. Health data is
frustratingly illiquid
<http://www.govhealthit.com/news/case-improving-health-data-liquidity>, a
truth that frustrates so many attempts to bring consumer level
functionality to the health care system, especially here in the USA.

But the same structural barriers to data liquidity that are so frustrating
have given us a gift, the gift of time. Time has revealed exactly how
abusive “data liquidity” can be when it’s controlled completely by large
corporations, by an app economy that uses design to make us think as little
as possible about the tradeoffs involved with our data. If we already had
it in health, do you think it’d be any more individually empowering?

We have a chance to do it right.

We have a chance to build a health system from the inside out around mobile
devices, around commodity prices for clinical data
<http://scienceexchange.com/>, around cheap DNA sequences
<http://23andme.com/>, around electronic health records owned by the
individual <http://healthit.gov/patients-families/your-health-data> rather
than the health care Borg.

It’s no small irony that we can use the very same devices that have been
revealed to relentlessly surveil us without agency to relentlessly surveil
ourselves for health and pool that data to advance our collective
understanding of health. And it’s going to happen, one way or another.
There’s too much money at stake.

But the choices that get made in what we measure, and how we measure,
encode our politics. We can measure depression with the secondary measure
of movement
<http://www.scientificamerican.com/podcast/episode/smartphone-app-catches-depression-o-12-02-09/>,
for example. Do we take in GPS data? If we do, do we measure the latitude
and longitude all the time, or the percentage change from a single point
over the course of the day. One of those choices is more exploitative than
the other. Choosing one is a clear proof of how we think about the
individual’s rights.

Doing research this way involves risks. Some of those risks we know:
disclosure, loss of privacy, risk of re-identification, discrimination,
bullying. Some of them we don’t. But clinical study has never been without
risk. Informed consent exists because we believe that “normal” people are
capable of balancing the risks of a study against its benefits, and
exercising their agency to decide to join or not
<http://en.wikipedia.org/wiki/Belmont_Report>.

We can’t transition to a new kind of science based on individual engagement
if we don’t agitate for people’s rights to share their data. We won’t be
able to do that until we start to loudly and regularly proclaim, basically,
that people can - should - must - be trusted to process complex concepts
about research and make an informed choice to participate.

Right now we run informed consent as a zero sum choice, a form written by a
doctor, edited by a lawyer and a committee, no agency at all besides yes or
no. The forms are typically long, filled with boilerplate that limits the
liability of the organizations involved, and ban re-use of the data.
Generally, we allow clinical research to treat the individual involved like
a piece of land on which valuable oil sits waiting to be extracted and
piped away. That’s what the participant gets to slog through, and it
has a predictable
impact. <https://www.youtube.com/watch?v=ss2hULhXf04>

That’s unacceptable. We have an entire industry devoted to making complex
things engaging <http://en.wikipedia.org/wiki/Interaction_design>, as long
as those complex things make it easier to purchase goods and services. We
need apply the same design tools towards the illustration of complex
concepts like de-identification, risks of data disclosure, and benefits of
data sharing and collaborative analysis.

We need a visual language for the concepts of informed consent and
research. We need technical frameworks that encode the agency of the
individual: return results to participants, allow them to connect with the
researchers, to connect with other participants. We need new norms and
structures that impose obligations on data users: to be good stewards, to
respect clinical study as partnership with real people, to be trustable.

We can do much of this with good informed consent.
<http://del-fi.org/post/100767055666/participant-centered-consent-toolkit-coming-soon>
Informed
consent is a vector into the entire engagement of people in research, and
it’s uniquely a vector that helps the open society world compared to the
corporate world.

And that’s another reason to do not just act on this chance, but to act
quickly: if we wait until the health care behemoths get to it, we can
expect informed consent to get road-graded down to a one-click. And that’d
be a damn shame.

(derived in part from a talk given at the Broad Institute yesterday
<http://www.slideshare.net/wilbanks/wilbanks-mpg-broad>)




-- 
-- 
*Carolina Rossini *
*Vice President, International Policy*
*Public Knowledge*
*http://www.publicknowledge.org/ <http://www.publicknowledge.org/>*
+ 1 6176979389 | skype: carolrossini | @carolinarossini
-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://lists.igcaucus.org/pipermail/bestbits/attachments/20141031/41c82809/attachment.htm>