scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

Health Research, Consent and the GDPR Exemption

2019 ◽  
Vol 26 (2) ◽  
pp. 97-119 ◽  
Author(s):  
Mary Donnelly ◽  
Maeve McDonagh
Keyword(s):  
Member State ◽  
Data Protection ◽  
Health Research ◽  
Social Values ◽  
State Level ◽  
Health Data ◽  
Personal Health ◽  
Policy Goal ◽  
Cross Border ◽  
Consent Requirement

Abstract This article analyses the balance which the GDPR strikes between two important social values: protecting personal health data and facilitating health research through the lens of the consent requirement and the research exemption. The article shows that the normative weight of the consent requirement differs depending on the context for the health research in question. This more substantive approach to consent is reflected in the research exemption which allows for a more nuanced balancing of interests. However, because the GDPR articulates the exemption at an abstract and principled level, in practice the balance is struck at Member State level. Thus, the GDPR increases difficulties for EU cross-border health projects and impedes the policy goal of creating a harmonised regulatory framework for health research. The article argues that in order to address this problem, the European Data Protection Board should provide specific guidance on the operation of consent in health research.

scholarly journals Sharing confidential health data for research purposes in the UK: where are ‘publics’ in the public interest?

2020 ◽  
Vol 16 (2) ◽  
pp. 249-265 ◽  
Author(s):  
Annie Sorbie
Keyword(s):  
Public Interest ◽  
Health Research ◽  
Health Data ◽  
The Public ◽  
Social Legitimacy ◽  
The Law ◽  
The Uk ◽  
Multiple Actors ◽  
Research Endeavour

In this article I respond to the tendency of the law to approach ‘the public interest’ as a legal test, thereby drawing the criticism that this narrow notion of what purports to be in the public interest is wholly disconnected from the views of actual publics, and lacks social legitimacy. On the other hand, to simply extrapolate outputs from public engagement work into policy (or indeed law) is equally problematic, and risks being at best ineffective and at worst reinforcing existing inequalities. Given this apparent disconnect between these conceptions of the public interest, and the shortfalls inherent in each, this article scrutinises this disjuncture. I argue that the application of a processual lens to the construction of the legal and regulatory role of the public interest sheds light on how legal notions of the public interest, and attitudes of actual publics towards data sharing, might be reconciled. I characterise this processual approach as being iterative and flexible, specifically drawing attention to the way that multiple actors, processes and interests interact, change and evolve over time in the health research endeavour. This approach is elaborated through two case studies that illustrate how the public interest appears in law (broadly conceived). Its application provides novel insights into the ways in which the public interest can be crafted within and beyond the law to better inform the development of health research regulation.

The Anonymisation of Research Data — A Pyric Victory for Privacy that Should Not Be Pushed Too Hard by the eu Data Protection Framework?

2017 ◽  
Vol 24 (4) ◽  
pp. 347-367 ◽  
Author(s):  
Paul Quinn
Keyword(s):  
Data Protection ◽  
Scientific Research ◽  
Health Data ◽  
Research Data ◽  
Point Of View ◽  
Personal Health ◽  
Legal Basis ◽  
Health Records ◽  
The Public ◽  
The Eu

Abstract Personal health data is essential to many forms of scientific research. Such data may come from a large variety of sources including electronic health records (ehrs), datasets used for previous research and from data linked to biobanks. European data protection law recognises that in addition to using consent as a legal basis for the processing of personal health data for scientific research, such data may be used without consent where it is in the ‘public interest’. Despite the existence of such a legal option, ethics bodies in a number of states have shown reticence to utilise it, often pushing researchers into either obtaining consent or anonymising the data in question. Whilst the latter option may be appealing from a legal point of view, if carried out properly, the result may be that the research value of the data is reduced or even destroyed.

Recht auf Vergessen und piercing the corporate veil zugleich Anmerkungen zur Google-Entscheidung des EuGH, Rs. C-131/12 Google Spain SL und Google Inc.

2014 ◽  
Vol 11 (4) ◽  
Author(s):  
Martin Schmidt-Kessel ◽  
Carmen Langhanke ◽  
Isabel Gläser ◽  
Hannah Kathrin Herden
Keyword(s):  
Search Engine ◽  
Data Protection ◽  
Public Law ◽  
General Concept ◽  
Economic Interests ◽  
The Public ◽  
Personal Involvement ◽  
Legal Writing ◽  
Piercing The Corporate Veil ◽  
Data Protection Law

AbstractWith its decision in the Google-case, the Court has put essential ground rules of EU data protection law in concrete terms. It has thereby deviated in several ways from leading opinions in legal writing which may partly be due to the fact that these are not free of personal involvement. More importantly though seems the conclusion that this decision underlines in many respects that theoretical patterns of EU private law are different from those of the traditional national law - and this divergence also holds true for major parts of the public law and, of course, data protection law. The Court has interpreted the responsibility with regard to data protection law and also the criteria in Art. 4 of the Directive very broadly, which has not met with general approval before. The ECJ strictly orientated itself by the general concept that even the search engine operator requires a permit for the processing of data. This in mind, it has given the fundamental right of data protection an important role in its considering in contrast to the user’s interest in respect of use of the service and the economic interests of the operator

scholarly journals Clarifying how to deploy the public interest criterion in consent waivers for health data and tissue research

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
G. Owen Schaefer ◽  
Graeme Laurie ◽  
Sumytra Menon ◽  
Alastair V. Campbell ◽  
Teck Chuan Voo
Keyword(s):  
Public Interest ◽  
Health Data ◽  
The Public ◽  
Tissue Research

scholarly journals Involving the Public in Data Linkage Research

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Mhairi Aitken ◽  
Annette Braunack-Mayer ◽  
Felicity Flack ◽  
Kimberlyn M McGrail ◽  
Michael Burgess ◽  
...  
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Consensus Statement ◽  
Data Linkage ◽  
Health Data ◽  
Advisory Council ◽  
Research Network ◽  
Plain Language ◽  
The Public ◽  
Data Intensive

Introduction“The Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research”, recent data breaches, and growing public awareness and controversy associated with secondary use of health data all highlight the need to understand what data sharing the public will support, under what circumstances, for what purposes and with whom. Objectives and ApproachThis symposium explores methods and findings from public engagement at all stages of data linkage research, beginning with short presentations (~6-8 minutes) on recent work: Mhairi Aitken: Consensus Statement - principles and an application using deliberative workshops to explore public expectations of public benefits from data-intensive health research Annette Braunack-Mayer/Felicity Flack: Surveys and citizens’ juries: Sharing government data with private industry Kim McGrail/Mike Burgess: Public deliberations on cross-sector data linkage, and combining public and private sources of data Alison Paprica: Plain language communication informed by Health Data Research Network Canada’s Public Advisory Council. Half the session will be spent interacting with the audience through live polling. The moderator will post a series of poll question such as “What is the most important thing for meaningful public engagement?” to prompt audience thinking on the topic. After the audience responses are revealed, panelists will share their own views about what they think is the best answer, and the main reason(s) behind their choice. The last 10-15 minutes of the session will be reserved for Q&A and dialogue with the audience. ResultsWe anticipate that this approach will surface emerging and tacit knowledge from presenters and the audience, and augment that through generative discussion. Conclusion / ImplicationsSession attendees will leave with a better understanding of the current state of knowledge and ways to talk about that understanding with other researchers, policy makers and the public.

scholarly journals To What Extent Does the EU General Data Protection Regulation (GDPR) Apply to Citizen Scientist-Led Health Research with Mobile Devices?

2020 ◽  
Vol 48 (S1) ◽  
pp. 187-195
Author(s):  
Edward S. Dove ◽  
Jiahong Chen
Keyword(s):  
Mobile Devices ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Specific Context ◽  
General Data Protection Regulation ◽  
Citizen Scientist ◽  
Open Questions ◽  
General Data ◽  
The Eu

In this article, we consider the possible application of the European General Data Protection Regulation (GDPR) to “citizen scientist”-led health research with mobile devices. We argue that the GDPR likely does cover this activity, depending on the specific context and the territorial scope. Remaining open questions that result from our analysis lead us to call for lex specialis that would provide greater clarity and certainty regarding the processing of health data by for research purposes, including these non-traditional researchers.

Sign in / Sign up

Export Citation Format

Share Document