I am wondering particularly in light of the new general data protection regulation coming into force across Europe shortly. We found data protection presented a significant challenge in our long term cohort follow up study.
This is a really good question, and the general issue has recently come up in my work. I looked around for studies, and found a couple of analysis of its effects. They seem to point out that there is an exception for "research," but the definition of "research" can vary by EU member state. Anonymization is said to help with the restriction, but pseudo anonymization, where data can be re-identified, has particular issues. Here are links I saw that may be helpful:
- How GDPR changes the rules for research (https://iapp.org/news/a/how-gdpr-changes-the-rules-for-research/)
- Genetic data and the research exemption: is the GDPR going too far? (https://watermark.silverchair.com/ipx006.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485ysgAAAZ8wggGbBgkqhkiG9w0BBwagggGMMIIBiAIBADCCAYEGCSqGSIb3DQEHATAeBglghkgBZQMEAS4wEQQMXHZIFc8PiFCnwTDUAgEQgIIBUnOe_kp8cV-PYPTaezyNL8R2Ry2J5YT7IoYKj8Ke3PUJFdcLNqf-81LdjrjRckvHu065htMFjgOqWUu9Qc-fX9mLE9o-iPuNc3-M1zeaMPq-D5gqwXN5q97Pau8oBSDICXgARYN4RnVAmO_BOBjI5wAWfm0KVXzTGWyq1SaabVXe0WIyeTF4yWxiF6DFDNqcwCek0fy08YGMG6LdjxueAYH1cuaNWyKiylDGwml9GTLGA6MzJVNlA9x_Ocd2Gq3kl5GimyUE-IIxr2RcjkIuOfSNu_ieUUsnsH7stcLGzVCk3zryvErg1i9Sa8007xi_s2u_jMN8GvCiekdRKZYC3RmXVPBJGv7Bu9NqbQxG6ZdsMhc6AMASDvdyqfC6fVg-m18HI0Fc2cJf2R-EnFUWzwNhMZ_d-g9LtB1v_fnjc9DnF1cI_VF7nTn75Q92o4_tDZWh)
- The impact of the EU general data protection regulation on scientific research (
Article The impact of the EU general data protection regulation on s...
) - The Effect of the General Data Protection Regulation on Medical Research (
Article The Effect of the General Data Protection Regulation on Medi...
)
Jeff, these links are so helpful. Thank you. I think the issue here is getting the balance between the rights of the individual and the potential societal benefits that research brings. My fear is that with a non-nuanced interpretation and zealous application of the GDPR that research and consequently the individuals whose lives it is designed to improve will suffer.
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