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Medical research, Big Data and the need for privacy by design
| Content Provider | SAGE Publishing |
|---|---|
| Author | Jacobs, Bart Popma, Jean |
| Copyright Year | 2019 |
| Abstract | Medical research data is sensitive personal data that needs to be protected from unauthorized access and unintentional disclosure. In a research setting, sharing of (big) data within the scientific community is necessary in order to make progress and maximize scientific benefits derived from valuable and costly data. At the same time, convincingly protecting the privacy of people (patients) participating in medical research is a prerequisite for maintaining trust and willingness to share. In this commentary, we will address this issue and the pitfalls involved in the context of the PEP project that provides the infrastructure for the Personalized Parkinson’s Project, a large cohort study on Parkinson’s disease from Radboud University Medical Center (Radboudumc), in cooperation with Verily life Sciences, an Alphabet subsidiary. |
| Related Links | https://journals.sagepub.com/doi/pdf/10.1177/2053951718824352?download=true |
| ISSN | 20539517 |
| Issue Number | 1 |
| Volume Number | 6 |
| Journal | Big Data & Society (BDS) |
| e-ISSN | 20539517 |
| DOI | 10.1177/2053951718824352 |
| Language | English |
| Publisher | Sage Publications UK |
| Publisher Date | 2019-01-18 |
| Publisher Place | London |
| Access Restriction | Open |
| Rights Holder | © The Author(s) 2019 |
| Subject Keyword | Big Data GDPR compliance informed consent polymorphic encryption privacy by design medical cohort study |
| Content Type | Text |
| Resource Type | Article |
| Subject | Information Systems and Management Library and Information Sciences Information Systems Computer Science Applications Communication |
