Individual privacy versus public good: protecting confidentiality in health research

2015 ◽  
Vol 34 (23) ◽  
pp. 3081-3103 ◽  
Author(s):  
Christine M. O'Keefe ◽  
Donald B. Rubin
Keyword(s):  
Public Good ◽  
Health Research ◽  
Individual Privacy

Health Research as a Public Good

2012 ◽  
Vol 2 (5) ◽  
Author(s):  
Michael D. Rawlins ◽  
Keyword(s):  
Public Good ◽  
Health Research

scholarly journals International transfers of health data between the EU and USA: a sector-specific approach for the USA to ensure an ‘adequate’ level of protection

2020 ◽  
Author(s):  
Laura Bradford ◽  
Mateo Aboy ◽  
Kathleen Liddell
Keyword(s):  
Data Protection ◽  
Health Research ◽  
International Health ◽  
Third Party ◽  
The European Union ◽  
Specific Approach ◽  
General Data Protection Regulation ◽  
Individual Privacy ◽  
The Usa ◽  
The Eu

Abstract International health research increasingly depends on collaboration and combination using medical data to advance treatment and drug discovery. The European Union (EU), through its General Data Protection Regulation, has tightened the rules for sharing data across borders to protect individual privacy. These new rules threaten cooperation between the EU and the USA, the two largest public funders of biomedical research. This article analyzes the primary pathway for sharing research data with the USA, the US–EU Privacy Shield††, and argues that the Shield is ill-suited to support complex health studies. Its legitimacy is in question under both EU and US law, and its terms are too restrictive for the variety of exchanges underlying research, treatment, and care. As an alternative, we propose that the USA seek an additional sector-based adequacy determination based on the existing US health privacy law, the Health Insurance Portability and Accountability Act. A sector-specific approach to adequacy for health would avoid many of the most contentious issues that divide the USA and EU on data protection. It could also serve as a model for other third-party jurisdictions and facilitate international harmonization of health research practices.

scholarly journals Securing the public good of health research and development for developing countries

2012 ◽  
Vol 90 (5) ◽  
pp. 398-400 ◽  
Author(s):  
John-Arne Rottingen ◽  
Claudia Chamas ◽  
LC Goyal ◽  
Hilda Harb ◽  
Leizel Lagrada ◽  
...  
Keyword(s):  
Developing Countries ◽  
Research And Development ◽  
Public Good ◽  
Health Research ◽  
The Public ◽  
Health Research And Development

scholarly journals Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries

2021 ◽  
Vol 1 ◽  
pp. 58
Author(s):  
Julia Nadine Doetsch ◽  
Vasco Dias ◽  
Marit S. Indredavik ◽  
Jarkko Reittu ◽  
Randi Kallar Devold ◽  
...  
Keyword(s):  
The Netherlands ◽  
Public Good ◽  
Scoping Review ◽  
Data Protection ◽  
Record Linkage ◽  
Health Research ◽  
Personal Data ◽  
Health Data ◽  
Member States ◽  
Cohort Data

Background: The GDPR was implemented to build an overarching framework for personal data protection across the EU/EEA. Linkage of data directly collected from cohort participants, potentially serving as a prominent tool for health research, must respect data protection rules and privacy rights. Our objective was to investigate law possibilities of linking cohort data of minors with routinely collected education and health data comparing EU/EEA member states. Methods: A legal comparative analysis and scoping review was conducted of openly accessible published laws and regulations in EUR-Lex and national law databases on GDPR’s implementation in Portugal, Finland, Norway, and the Netherlands and its connected national regulations purposing record linkage for health research that have been implemented up until April 30, 2021. Results: The GDPR does not ensure total uniformity in data protection legislation across member states offering flexibility for national legislation. Exceptions to process personal data, e.g., public interest and scientific research, must be laid down in EU/EEA or national law. Differences in national interpretation caused obstacles in cross-national research and record linkage: Portugal requires written consent and ethical approval; Finland allows linkage mostly without consent through the national Social and Health Data Permit Authority; Norway when based on regional ethics committee’s approval and adequate information technology safeguarding confidentiality; the Netherlands mainly bases linkage on the opt-out system and Data Protection Impact Assessment. Conclusions: Though the GDPR is the most important legal framework, national legislation execution matters most when linking cohort data with routinely collected health and education data. As national interpretation varies, legal intervention balancing individual right to informational self-determination and public good is gravely needed for health research. More harmonization across EU/EEA could be helpful but should not be detrimental in those member states which already opened a leeway for registries and research for the public good without explicit consent.

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