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Personal data usually has to be anonymised, e.g. aggregated, to be published as open data. However, some individuals are willing to share some of their personal data for example to contribute to medical research.

  1. Are there exemplar individual efforts?
  2. Are there great tools and platforms that enable sharing personal data?

Examples to start with are: Open Paths, commodify.us etc.

  • This paper contains a few case studies ncbi.nlm.nih.gov/pmc/articles/PMC2956225 – Tasos Jan 16 '14 at 15:00
  • I remember reading something about a protest of the NSA spying where people had something set up to automatically post data online about what they were doing ... but I'm not having luck finding it. (and so I can't check what license they were releasing it under) – Joe Jan 17 '14 at 19:08
  • I just thought of another one, but don't have time to track down the full reference -- Amish communities have contributed to genetic databases. (they don't have a complete ban on technology; they ban specific items when they're seen to be a detriment to their society). – Joe Jan 23 '14 at 16:26
  • will update and create a comprehensive answer soon. – Ulrich Jan 30 '14 at 12:08
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Stephen Friend of Sage Biometrics gave a talk at the Symposium on Global Scientific Data Infrastructures in which he mentioned that people were putting their medical data out there to try to help find cures for their ailments. (and often paying of of pocket for their DNA to be sequenced so it could be shared)

Sage Biometrics operates Synapse to help distribute and analyze that and other public biometrics data.

update More info on the effort is at http://sagebase.org/bridge/ :

Toward this goal, Sage Bionetworks, with support from the Robert Wood Johnson Foundation’s Pioneeer Portfolio is building BRIDGE a web-based, open-source platform that will allow patients to provide their data and insights as research partners on the health problems that matter most to them.

On BRIDGE, citizens, patients and researchers will be able to use online tools that connect people, their data and their stories to build communities focused on defining the research question that matters most to patients and their families. Participants will be able to use BRIDGE’s consent tools and data portal to contribute their health data into open research projects such as those that Sage Bionetworks is enabling with its Synapse data repository and collaborative work space. The insights that come from the data will then be reported back on BRIDGE and also drive new rounds of research collaborations.

2

One area where there are multiple projects to share personal data in an open way is in genetics.

Projects like Genomes Unzipped contain autosomal DNA test results for named individuals (public domain). There are many more of these genotypes at OpenSNP. This personal data is shared to enable research on variations in genes for medical research, and also for ancestry (genealogy). There are many other ancestry-specific projects where named individuals share specific parts of their genes to hope to match with distant relatives, and some make their data freely available.

Some other data collections like 1000 Genomes do anonymise data, but there are problems when some projects try to keep personal data anonymous and others with similar or the same data do not, as the data can sometimes be matched to identify people.

Like Open Paths, Open Street Map has a large collection of GPS tracks. Some people use their full names, and the tracks probably include where they live and/or work, so they can be identified, even if that is not the intention.

1

Quantified Self project (start with blog on home page for "calls for data" and the forums for people posting how to get/use/provide their own data). They also have an open-data tag that has some specific posts.

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