DATA DONATION
We are in a time of ‘frictionless sharing’ whereby our activities and personal experiences are documented and distributed every second across installations of online networks. As such, there are a growing number of civic and corporate responses - Data Philanthropy, Data Donation, Data Collaboratives, Data Pooling, Data Markets, Data Brokers, and Open Data Platforms. These activities promote open data, the sharing of data for the benefit of society, and empower individuals to engage with their digital trace. Of note is Data donation, for it is the primary example of how citizens are becoming aware of and are engaging with their data shadows.
At this moment, only a small number of platforms enable data donation. The ones listed below have purposes of either data donation to research or to a charity. For a full data set of data sharing activities, please view here.
Civic & Corporate Responses to Big Data' designed by Joanna Sleigh, 2017
Medical Research Platforms
- All of Us a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health
- The Data Donation Pass a place where citizens can store their health and fitness data and donate it to research
- Personalgenomes.org a platform developed at Harvard where one can donate genome and health data
- Share.ambrygen.com - enables the donation of genetic information
- PatientsLikeMe.com enabling patients to donate their medical data for research
- Tidepool.org securely and anonymously enables one to donate de-identified diabetes device data to researchers, device makers, and other innovators who deeply need it
- Opensnp.org allows users to publish their test results, find others with similar genetic variations, learn more about their results by getting the latest primary literature on their variations, and help scientists find new associations
- Midata.com storage and sharing platform for personal health data
- Heartrateapp.com one of the world’s largest heart health initiatives that is gathering donated heart rhythms for a study of Atrial Fibrillation
- DataCubed a life-sciences tech company building better societies through better data
- The Human Project a participatory research project tracking 10,000 New Yorkers for twenty years
- 23andMe a personal genomics and biotechnology company whereby participants can share genetic data
- OurDataHelps.org powered by Qntfy it serves to further scientific understanding of mental and emotional health
- Million Veterans Program to partner with Veterans receiving their care in the VA Healthcare System to study how genes affect health
- DataDonors.org a Wikilife project that collected data to be used by researches to improve health
'The Human Project 2017' published Dec 2017 by The Human Project as a promotion of their research platform.
''Donate Your Data' published on Apr 26, 2016 by Waoo Donate Your Data promoting their platform Donate Your Data by WAOO.
'Our Data Helps' published on Sep 27, 2016 by Qntfy who created Ourdatahelps.org, a website where you can donate data for mental health research.
'Our Data Helps' published on Sep 27, 2016 by Qntfy who created Ourdatahelps.org, a website where you can donate data for mental health research.
Charity Platforms
- DonateYourData.info collects data using a plugin which you then donate to your charity of choice.
- TheGoodData.org using a browser extensions to block other data trackers, and donate your data to a charity of choice.
'Digi.me – I am data' Published on Sep 28, 2016 by digi.me promoting their platform Digi.me
Other Data Sharing Platforms
- Datacoup.com helps you sell your anonymous data for cash.
- ProQOL Data Donation where one can donated databases, domain theories and data generators for the empirical analysis of machine learning algorithms;
- Digi.me is an app to manage personal data and potentially sell it to businesses.
- Ownyourdata.eu allows you to donate data in a privacy respecting way. Data requestors describe the data that they are looking for and provide the necessary infrastructure.
- Ecobee.com/donateyourdata/ is an opt in donation of household energy to advance sustainable living;