GigaScience Press

Nicole Nogoy

![](http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/IMG_9708-5-copy-300x149.jpg){.alignleft
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srcset="http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/IMG_9708-5-copy-300x149.jpg 300w, http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/IMG_9708-5-copy-768x382.jpg 768w, http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/IMG_9708-5-copy-1024x509.jpg 1024w, http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/IMG_9708-5-copy.jpg 1924w"
sizes="(max-width: 395px) 100vw, 395px"}In the data driven era, not only
in research but in our day-to-day lives, people are creating more and
more personal digitized data that enables human-participant research in
social sciences and personalized medicine. However, with numerous data
streams and types this raises concerns such as how to merge and share
such data, as well as ethical problems.

Published today in *GigaScience*, is [Open
Humans](https://doi.org/10.1093/gigascience/giz076), a collaborative
effort led by Bastian Greshake Tzovaras and Mad Price Ball to present
case studies and provide an open call for contributors to their
community-based platform for participant led research. Having launched
in 2015, this unique open source, community-centric platform has been
featured in
[Forbes](http://www.forbes.com/forbes/welcome/?toURL=http://www.forbes.com/sites/arleneweintraub/2015/03/27/open-humans-network-invites-everyone-to-share-their-personal-health-data/&refURL=&referrer=),
[Newsweek](http://www.newsweek.com/new-online-platform-allows-you-open-source-your-body-316485),
[Scientific
American](http://www.scientificamerican.com/podcast/episode/donate-your-health-data-to-medical-science/),
and [more](https://www.openhumans.org/news/). Here in one of our [Author
Q&A's](http://gigasciencejournal.com/blog/tag/qa/), Bastian Greshake
Tzovaras (Director of Research) and Mad Price Ball (Executive Director)
share a little history of [Open Humans](https://www.openhumans.org/), as
well as their thoughts on current challenges, such as social media
scandals, and data restrictions.

**How did the idea of Open Humans take shape? You were previously both
involved in OpenSNP and the Personal Genome Project, so what does Open
Humans bring beyond these efforts sharing personal genotype and
phenotype information?**

[[Open Humans](https://www.openhumans.org) was first founded in a
nonprofit that had previously supported the PGP, and it's an iteration
that on the approach taken by the
[PGP](https://www.personalgenomes.org/) and
[openSNP](https://opensnp.org/). They're definitely connected ideas!
Open Humans is based on lessons we
learned.]{style="font-weight: 400;"}[  
]{style="font-weight: 400;"}[  
]{style="font-weight: 400;"}[The first big difference is that Open
Humans offers a lot more privacy. Both openSNP and the Personal Genome
Project take a rather radical approach to the sharing of personal data:
Agree to make it all public and allow everyone to use the data, no
questions asked. This is approach is very valuable as it removes the
friction in wanting to use these data and allows the data to have the
most impact. But the fact is also that this approach to data sharing
isn't for everyone: Not everyone is comfortable to put their data
publicly out there. This is why Open Humans gives people control about
which data to share with whom. So individuals can select which uses of
their data they agree with and consent individually to having the data
used for that project.]{style="font-weight: 400;"}

[The second big difference between Open Humans on the one hand and the
PGP and openSNP on the other is what kinds of data people can import and
share. The PGP and openSNP have their focus on genetic data and
phenotypic data. But we all collect so much more data about ourselves
these days: GPS records of where we've been, our social media usage
behaviour, our physical activity from all the wearable devices etc. Many
of these data types are just as interesting as genetic data and often
even more useful to the individual and for
research.]{style="font-weight: 400;"}

**  
What does participant-centered research enable that traditional research
and healthcare systems currently doesn't handle? Why should patients
share their data in this way?**

[It's important to recognize that research with people and their data
isn't a "zero sum game": the same data can be involved in exploring a
variety of questions. Including patient communities and other
non-institutional opportunities is beneficial because these groups often
prioritize questions, needs, and projects that are very different from
the priorities traditional institutional research teams might
investigate. Perhaps more importantly, these goals are often things
people ]{style="font-weight: 400;"}*[want]{style="font-weight: 400;"}*[
to be part of. As a result, we're unlocking
]{style="font-weight: 400;"}*[more
]{style="font-weight: 400;"}*[research than we had before, supporting
innovation that would not otherwise happen.]{style="font-weight: 400;"}

**  
You've both obviously drunk the cool-aid of carrying out
participant-centered research on yourselves, so what types of data are
you both collecting? What have you learnt about yourself from studying
and sharing it?**

::: {#attachment_2942 .wp-caption .alignright style="width: 197px"}
![Open Humans thesis
writing](http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/writing-effects-187x300.png){.wp-image-2942
.size-medium loading="lazy" decoding="async"
aria-describedby="caption-attachment-2942" width="187" height="300"
srcset="http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/writing-effects-187x300.png 187w, http://gigasciencejournal.com/blog/wp-content/uploads/2019/06/writing-effects.png 624w"
sizes="(max-width: 187px) 100vw, 187px"}

The effects of writing a PhD, Source: Bastian Greshake Tzovaras
:::

[BGT: Phew, I'm collecting really too much data to give a comprehensive
list. Besides having multiple genotyping and exome sequencing data sets,
I've been an extensive user of wearable devices for many years to
collect things like physical activity, heart rate, sleep, body
temperature, weight etc. I also have an extensive collection of my geo
locations and then there's also all the social media/digital device
usage data such as my
[Twitter](https://www.openhumans.org/activity/twitter-archive-analyzer/)
& [Spotify](https://spotify.openhumans.org/) usage and keeping track of
which apps & websites I use when. The last fun thing I learned from my
data is how unhealthy it was to finish my PhD. By visualizing my weight,
physical activity and time spent working over time I could see that I
easily gained 3 kilograms of weight during the last 2 ½ months of
writing up my thesis (]{style="font-weight: 400;"}[[see blog post
here]{style="font-weight: 400;"}](https://tzovar.as/phd-survival-guide/)[)! ]{style="font-weight: 400;"}

[MPB: I feel like I'm a bit late to the game with self-tracking, but
I've got two major themes going on right now that have been really
useful for me. One is my diet: I've lost 25 kilograms since 2017 ---
boring maybe, but valuable for me! The continuous feedback of food
logging and weight tracking have helped me. Also, more recently, I've
gotten into mood tracking. It's been very interesting to look back on my
highs and lows --- how long they last, and how things return to
"average" in the end. I can also see my personal daily rhythm: starting
high and drifting down each day. (I've always been more of a morning
person!) Mood might relate to many other things --- from personality to
genetics to social media use-- and it's a great target for personal
interventions we might be making to, literally, be happier
people.]{style="font-weight: 400;"}

**  
We are obviously also on the side of opening up data, but in a world of
facebook scandals, ancestry websites being mined by law enforcement, and
dystopian Chinese social credit systems, what do you say to critics of
sharing your personal information in this way? Have you personally seen
any examples of data sharing that have had negative consequences? And
what steps have Open Humans taken to protect against these and address
new legislative challenges like GDPR?**

[Sharing data can certainly be challenging and have negative
consequences, especially when data is being made openly available.
That's why Open Humans takes a 'private-by-default' approach. All
personal data stored in Open Humans is private by default and always
accessible to the member themselves. And from there members can choose
for example to share individual bits with a specific research study or
even make individual datasets publicly available. This granular sharing
helps in giving people much more control over who can use their data and
for what ends. Similarly, we have our community review each new
project/study that wants to run on Open Humans. In this way the
community at large has control over which data can be used on Open
Humans. This individual and community agency helps a lot in minimizing
the dangers of sharing. ]{style="font-weight: 400;"}

[In terms of legislative challenges, we are actually big fans of the
GDPR. The rights of data subjects under the GDPR -- such as giving more
control to users through specific consent, allowing them to access their
data, ensuring data portability, etc. -- are well aligned with our
values and goals for Open Humans. This made implementing the GDPR rules
rather straight-forward for us!]{style="font-weight: 400;"}

**  
It was great Bastian visited us in Shenzhen to present at the BGI ICG
Conference session we organised on [Community
Genomes](http://From%20travelling%20the%20world%20have%20you%20seen%20differences%20in%20how%20people%20interact%20with%20and%20share%20their%20medical%20data?%20To%20address%20this%20have%20you%20tried%20to%20make%20Open%20Humans%20compatible%20with%20different%20legal%20frameworks%20or%20more%20regionally%20specific%20data%20sources%20(e.g.%20geographically%20different%20social%20media%20platforms%20or%20wearable%20devices)?)
(see video below). From traveling the world have you seen differences in
how people interact with and share their medical data? To address this
have you tried to make Open Humans compatible with different legal
frameworks or more regionally specific data sources (e.g. geographically
different social media platforms or wearable devices)?**

I think there are definitely cultural differences in how people perceive
the sharing of their personal data at large and how they navigate the
balance of generating and using data and privacy issues around it. You
can already see those differences between continental Europe and the
UK/US: In my experience, people in continental Europe are much more
concerned with protecting their privacy and are more likely to worry
about the consequences of sharing their personal data or putting
information on the internet compared to folks in the US or UK. So far we
have not tried to target different legal frameworks in different ways.
But by following the EU's GDPR we're complying with one of the most
extensive regulations around the globe.

When it comes to regionally specific data sources like wearables or
social networks that are popular in specific areas, we haven't
specifically tried to implement those into Open Humans yet. This is
largely due to the fact that it is not easy to build tools to import
data from devices that one doesn't have access to personally. But as
Open Humans is a modular ecosystem it allows anyone to build and provide
a data importing project for their preferred regional wearables or
social networks! I've people are motivated to build something like this
we're always happy to provide support in how to connect to the Open
Humans APIs.

### ** References** {#references}

Greshake Tzovaras  B, Angrist  M, Arvai  K, Dulaney M,
Estrada-Galiñanes  V, Gunderson  B, Head  T, Lewis  D, Nov  O, Shaer O,
Tzovara  A, Bobe  J, Price Ball M. Open Humans: A platform for
participant-centered research and personal data exploration.
*GigaScience*. 2019.
[https://doi.org/10.1093/gigascience/giz076. ](https://doi.org/10.1093/gigascience/giz076)

Open Humans. <https://www.openhumans.org>/

The post [Power to the People and Their Data -- The Open Humans Way. Q&A
with Bastian Greshake Tzovaras and Mad Price
Ball](http://gigasciencejournal.com/blog/open-humans-qa/){rel="nofollow"}
appeared first on
[GigaBlog](http://gigasciencejournal.com/blog){rel="nofollow"}.


In the data driven era, not only in research but in our day-to-day lives, people are creating more and more personal digitized data that enables human-participant research in social sciences and personalized medicine. However, with numerous data streams and types this raises concerns such as how to merge and share such data, as well as ethical problems.

Messaggi di Rogue Scholar

Power to the People and Their Data – The Open Humans Way. Q&A with Bastian Greshake Tzovaras and Mad Price Ball