Data Donation as a Model for Citizen Science Health Research
New computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for heal...
| Main Authors: | , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Ubiquity Press
2019-03-01
|
| Series: | Citizen Science: Theory and Practice |
| Subjects: | |
| Online Access: | https://theoryandpractice.citizenscienceassociation.org/articles/178 |
| _version_ | 1818311093503655936 |
|---|---|
| author | Matthew Bietz Kevin Patrick Cinnamon Bloss |
| author_facet | Matthew Bietz Kevin Patrick Cinnamon Bloss |
| author_sort | Matthew Bietz |
| collection | DOAJ |
| description | New computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for health-focused citizen science, with special attention to the ethical challenges and opportunities that this model presents. We also highlight some existing data donation projects curated by citizen scientists. After describing data donation in more detail, including its relationship to movements like the Quantified Self and research in personalized medicine, we report findings from the Health Data Exploration (HDE) Project’s second annual Network Meeting, which was focused on data donation. These findings include identification of four challenges for the ethical conduct of health-focused data donation research: Participant protection, representativeness, incentives to participate, and governance. We use these insights as a springboard for further discussion of specific issues, pointing both to the current state of the field and our suggestions about potential pathways for addressing some of the challenges. |
| first_indexed | 2024-12-13T07:56:29Z |
| format | Article |
| id | doaj.art-4b57be6f1d19464dadda7f36b0a5c39a |
| institution | Directory Open Access Journal |
| issn | 2057-4991 |
| language | English |
| last_indexed | 2024-12-13T07:56:29Z |
| publishDate | 2019-03-01 |
| publisher | Ubiquity Press |
| record_format | Article |
| series | Citizen Science: Theory and Practice |
| spelling | doaj.art-4b57be6f1d19464dadda7f36b0a5c39a2022-12-21T23:54:31ZengUbiquity PressCitizen Science: Theory and Practice2057-49912019-03-014110.5334/cstp.17852Data Donation as a Model for Citizen Science Health ResearchMatthew Bietz0Kevin Patrick1Cinnamon Bloss2University of California, IrvineUniversity of California, San DiegoUniversity of California, San DiegoNew computational and sensing innovations, coupled with increasingly affordable access to consumer health technologies, allow individuals to generate personal health information that they are then able to submit to a shared archive or repository. This paper presents data donation as a model for health-focused citizen science, with special attention to the ethical challenges and opportunities that this model presents. We also highlight some existing data donation projects curated by citizen scientists. After describing data donation in more detail, including its relationship to movements like the Quantified Self and research in personalized medicine, we report findings from the Health Data Exploration (HDE) Project’s second annual Network Meeting, which was focused on data donation. These findings include identification of four challenges for the ethical conduct of health-focused data donation research: Participant protection, representativeness, incentives to participate, and governance. We use these insights as a springboard for further discussion of specific issues, pointing both to the current state of the field and our suggestions about potential pathways for addressing some of the challenges.https://theoryandpractice.citizenscienceassociation.org/articles/178citizen sciencedata donationinformed consentdata accessprivacydata governance |
| spellingShingle | Matthew Bietz Kevin Patrick Cinnamon Bloss Data Donation as a Model for Citizen Science Health Research Citizen Science: Theory and Practice citizen science data donation informed consent data access privacy data governance |
| title | Data Donation as a Model for Citizen Science Health Research |
| title_full | Data Donation as a Model for Citizen Science Health Research |
| title_fullStr | Data Donation as a Model for Citizen Science Health Research |
| title_full_unstemmed | Data Donation as a Model for Citizen Science Health Research |
| title_short | Data Donation as a Model for Citizen Science Health Research |
| title_sort | data donation as a model for citizen science health research |
| topic | citizen science data donation informed consent data access privacy data governance |
| url | https://theoryandpractice.citizenscienceassociation.org/articles/178 |
| work_keys_str_mv | AT matthewbietz datadonationasamodelforcitizensciencehealthresearch AT kevinpatrick datadonationasamodelforcitizensciencehealthresearch AT cinnamonbloss datadonationasamodelforcitizensciencehealthresearch |