FRRIICT case study: assuring effective personal choice in a world of open data

Identifying ethically collected recordings of people

Led by Megan Quentin-Baxter, MEDEV, School of Medical Sciences Education Development, Faculty of Medical Sciences, Newcastle University. An introductory video is available.

21/2/2012 - 16/7/2012

Additional contributors

Dr Jane Williams, Director eLearning, Medical Education, Faculty of Medicine and Dentistry, University of Bristol, Senate House, Tyndall Avenue, Bristol BS8 1TH. An introductory video is available.

Suzanne Hardy, Senior Advisor, MEDEV, School of Medical Sciences Education Development, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4HH. An introductory video is available.

Rev Byran Vernon, School of Medical Sciences Education Development, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4HH and General Secretary, Institute for Medical Ethics (IME).

Acknowledgements

FRRIICT logo EPSRC logoThis award is supported by the Framework for Ethical Research ICT in collaboration with the Partnership Resource Fund from the RCUK Horizon Hub grant (grant EP/G065802/1).

Final report

The final report in doc and pdf formats is available to download. 

Project summary

Collecting photographs, video or other recordings of potentially identifiable people for use in research or teaching presents particular challenges for researchers, teachers and data subjects, especially now that the UK has prioritised ‘open’ access to publicly funded research data and teaching materials. When this involves patients, it is essential that we operate the highest ethical standards. Recent consultative research has produced guidelines for academics[1].

Once a recording has been shared in a digital format it is impossible to make it private again. Robots take index copies, people download them, files are tweeted and forwarded. Recordings may be ‘defaced’. While we take care to seek informed consent and anonymise recordings, we don’t yet know what future technologies will enable, for example, faces, body shapes, gaits and voices to be identified; or anonymised stories to be traced back to their origin.

People feel strongly about recordings of them appearing in the media and on the internet. Where they have previously given permission, they may change their minds and wish to edit or remove a recording from a public space. Families of those who have become incapacitated or died may request that recordings to be taken down.

This case study will review the principles1 and examples of data collected in OER[2] and MRD[3] projects to identify a range of instances where digital recordings of people are made, and evaluate whether the approach proposed for patients has wider public application.

 


 

[1] British Clinical Recordings Taskforce (now ended). Making and using clinical and healthcare recordings in learning and teaching. Website launched 5 December 2011. Accessed January 2012 from http://www.jiscdigitalmedia.ac.uk/clinical-recordings/.

[2] Organising open educational resources phase 1 JISC OER project. Sixty copyright and consent case studies from fifteen UK institutions and an online copyright, consent and policy support toolkit. Accessed January 2012 from http://www.medev.ac.uk/ourwork/oer/.

[3] iridium managing research data phase 2 (2011-12) JISC project. Accessed January 2012 from http://research.ncl.ac.uk/iridium/

 
 
MEDEV, School of Medical Sciences Education Development,
Faculty of Medical Sciences, Newcastle University, NE2 4HH

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