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Opinion 05/2014 on Anonymisation Techniques – ARTICLE 29 DATA PROTECTION WORKING PARTY (2017)0

Posted by Admin in on November 30, 2017
 

EXECUTIVE SUMMARY

In this Opinion, the WP analyses the effectiveness and limits of existing anonymisation techniques against the EU legal background of data protection and provides recommendations to handle these techniques by taking account of the residual risk of identification inherent in
each of them.

An interesting, if a bit long and technical, discussion about the anonymization of big data. A hurried kneejerk reaction might be to stop any sharing of large datasets – a situation that wouldn’t be in the public interest. But researchers should consider and research ethics reviewers discuss – Is it necessary to share an entire case (all the variables)? How realistic/practical is it to identify individuals? Are there any risks if individuals are identified? In light of such matters can the sharing of data be ethically justified? Another reason to include a computer scientist on your research ethics committee.

The WP acknowledges the potential value of anonymisation in particular as a strategy to reap the benefits of ‘open data’ for individuals and society at large whilst mitigating the risks for the individuals concerned. However, case studies and research publications have shown how difficult it is to create a truly anonymous dataset whilst retaining as much of the underlying information as required for the task.
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In the light of Directive 95/46/EC and other relevant EU legal instruments, anonymisation results from processing personal data in order to irreversibly prevent identification. In doing so, several elements should be taken into account by data controllers, having regard to all the means “likely reasonably” to be used for identification (either by the controller or by any third party).
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Anonymisation constitutes a further processing of personal data; as such, it must satisfy the requirement of compatibility by having regard to the legal grounds and circumstances of the further processing. Additionally, anonymized data do fall out of the scope of data protection legislation, but data subjects may still be entitled to protection under other provisions (such as those protecting confidentiality of communications).
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Read the full opinion paper

Global Health Research in an Unequal World: Ethics Case Studies from Africa (Gemma Aellah | 2016)0

Posted by Admin in on November 23, 2017
 

PREFACE
Conducting good, ethical global health research is now more important than ever. Increased global mobility and connectivity mean that in today’s world there is no such thing as ‘local health’. How we experience the effects of disease may be shaped by our particular social and political-economic circumstances, but the sick in one part of the world and the healthy in another are connected through economics, politics, media, and imagination, as well as by the infectiousness of disease. Global health research carried out through transnational collaboration is one crucial way in which people from far-flung geographic regions relate to each other. Good global health research, and the relationships it creates, therefore, concerns us all.

This book is a collection of fictionalized case studies of everyday ethical dilemmas and challenges often encountered in the process of conducting global health research in Africa where the effects of global, political and economic inequality are particularly evident. Our aim is to create a training tool which can begin to fill the gap between research ethics guidelines and their implementation ‘on the ground’. The case studies, therefore, focus on everyday or ‘relational’ ethics: ethical actions and ideas that emerge through relations with others in context, rather than in universal principles or abstract regulations

Aellah, G; Chantler, T; Geissler, PW (2016) Global Health Research in an Unequal World: Ethics Case Studies from Africa CABI: Oxfordshire, UK. Available at: https://www.cabi.org/cabebooks/FullTextPDF/2016/20163308509.pdf

The Ethics Journey in Children’s Research: Checklist0

Posted by Admin in on November 21, 2017
 

Introduction to the Department
“The Department of Children and Youth Affairs was established on 2nd June 2011. The Government decided to create this dedicated Department and, in doing so, to consolidate a range of functions previously discharged by various Government Ministers. The Minister for Children and Youth Affairs sits at the Cabinet table

Quite a nice short checklist from the Irish government for developing ethical research projects involving children

  • Author: Anne Cleary
  • Abstract: Guidance for developing ethical research projects involving children.
  • Publisher: Government Publications
  • Publication Year: 2012
  • Pages: 2:
  • Keywords: Ethics, research, checklist, methodology, REC
  • Record Number: 433
  • Accessible Format: N/A

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Access the DCYA checklist
Other DCYA research resources

Is it too Late for Big Data Ethics? – Forbes (Kaslev Leetaru | October 2017)0

Posted by Admin in on November 1, 2017
 

Over the past few weeks my inbox has seen a steady stream of emails on the topic of big data and AI research ethics. From the NSF-funded PERVADE study to industry initiatives to roundtables and discussions at the Association of Internet Researchers annual meeting in Tartu, Estonia this week, it would seem data ethics has hit its stride. Yet, should we have hope that there will actually be change, or is it just too late for big data ethics?

As I’ve written again and again and again and again and again on these pages, the tide in the world of big data and AI research seems to have turned decidedly against the notion of outside ethical review. Instead of asking what questions we should be asking that would better human society, data scientists today all-too-often ask what questions are possible with the data and tools at hand and especially what questions would generate the most attention (and hence publication prestige and grant funding).

Even while academia publicly promotes a narrative of soul searching and a return to focusing on what data scientists should do, rather than what they can do, the reality is little changed. Studies generate public outrage and statements of editorial concern, only for the journal and university to turn around after things have quieted down and say they would do little differently. Professional societies that have become synonymous with extensive full IRB review and informed consent welcome into their own journal papers that have neither. Prominent researchers tout…

Read the rest of this discussion piece

Is it time to bring a big data/computer science person* into the membership of Human Research Ethics Committees now irrespective of whether it’s a requirement of the national arrangements? Hint: We think we should be talking about it at a committee level AND at the national level. The topic isn’t necessarily pervading all disciplines… YET… but work being undertaken by government-funded-institutions NOW appears to beginning to touch on research ethics matters in a way that should be informed by ethical thinking and reviewed by a research ethics committee. *Even if that person isn’t conversant in ethics and big data or ethics in computer science. Perhaps it’s precisely the fact they don’t already have that knowledge is why it might be useful to bring them into a committee.

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