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Assuring effective personal choice in a world of open data: identifying ethically collected recordings of people

Technologies involved

These were simple technologies supporting ‘open’ research data and teaching materials involving recordings of people made available on the internet. The scenarios are characterised by changes in curation, copying and availability (typically digitisation), combined with the passage of time, and changes that occur in the law and public opinion.

In the 1940s a screen star signed away her performance rights permission/consent ‘in perpetuity’. She later successfully sued her film company who had distributed the films on the (then unimagined) internet, arguing that she could not have foreseen that future. (WIPO, 2002).

Background to the case

Background

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 (Jha, 2012) and UNESCO (2012) access to OER. It is essential that we operate the highest ethical standards when this involves patients, and some guidelines are available (British Clinical Recordings Taskforce, 2011). Likewise it was difficult for users to know, when searching particularly for teaching resources, what recordings/data sets had been ethically collected and managed, because most providers do not clearly state both the copyright and consent status of open resources (Ellaway et al., 2000). In recent high profile celebrity cases the law favoured the photographer/source, not the subject.

Consent: Dr Susan HallowellFigure 1. ©2002 Transportation Security Administration, image of Dr Susan Hallowell, Director, Research Lab, http://en.wikipedia.org/wiki/Backscatter_X-ray accessed Sept 2012. All rights reserved. Used with permission. Consent obtained, and fully reserved (anyone wishing to use this please obtain consent first).

Once a recording has been shared in a digital format on the internet (such as Figure 1) it is almost impossible to make it private again, and it may be ‘defaced’. Robots take index copies, people download them, files are tweeted and forwarded. 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 (Hardy, 2005), and for celebrities these may be salacious. People may change their minds after giving consent or permission, 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 be altered or taken down. Even where full consent has been obtained, risk-adverse institutions normally wish to respond to family pressure.

Plan and methodology

This case study reviewed the principles and examples of data collected in OER (Newcastle University, 2011) and MRD (Newcastle University, 2012) 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.

Stage 1 ethical approval was secured. A project website was established at http://www.medev.ac.uk/ourwork/FRRIICT/ and a project team area set up at http://bit.ly/Q1WnTy (login required). For full outputs see Table 1.

Table 1: Activity and dissemination plan.

Timing Dissemination Activity Audience Purpose Progress
Feb 2012 Stage 1 ethical approval sought Faculty ethics committee Securing ethical approval Completed
Feb – Apr 2012 Project team finalising detail of project plan Project team Partners f2f discussions Completed
Apr 2012 Review of literature and current ethics guidance Project team Identifying what is already available Completed
Apr 2012 Baseline evaluation Project team Capture motivation to be involved Three out of four completed
May 2012 Scenario documenting Project team Documenting scenarios identified by the project team Completed
May 2012 Interim report Programme manager Update on project progress Completed
May 2012 Survey MRD and OER mailing lists Research and teaching policy developers Promote awareness among ‘open’ supporters Completed
Jun – Jul 2012 Run two national workshops National To validate project findings, lens forward to 2025+, document other scenarios Completed
Jun 2012 Finalise widget International Thought-provocation, dissemination Widget available (see Figure 26below)
Jun 2012 At least one conference submission National Dissemination of ideas Paper presented at Digital Research 2012
Jul 2012 Update risk-kit http://ooer.labyrinth.mvm.ed.ac.uk/ International Advice and guidance
http://www.medev.ac.uk/blog/megans-blog/
Risk-kit reviewed to identify areas for update and new FAQs drafted
Jul 2012 Final report International Dissemination of project findings Completed
Sept 2012 FRRIICT dissemination event National /International Dissemination of project findings Attending 1 October 2012
2014 FRRIICT showcase event National /International Dissemination of project findings To be advised by the FRRIICT team

 

A review of internet-related ethical advice for researchers and teachers was undertaken (see Bibliographyon page 11below). Most institutions provided good ethical guidance for research (e.g. Newcastle University, 2011) and referred to the Association of Internet Researchers guidelines (Ess, C. and the AoIR ethics working group, 2002). Ethical guidance for teachers (as opposed to researchers) was sparse, with the exception of that provided by the Clinical Recordings Task Force (2011) and MEDEV (2012). Reports and case studies of past projects, such as Organising Open Educational resources (MEDEV, 2011), were reviewed for examples of ethical issues.

Two workshops were arranged, one in Bristol (11 July 2012) and one in Newcastle (17 July 2012) involving 10 and 14 stakeholders respectively (see Appendix one: workshop detailson page 15below). These groups represented a wide range of stakeholders, from computing and privacy to ethics committees, researchers, teachers and students. Two representatives of the Institute for Medical Ethics attended. Comprehensive notes were taken of the discussion by two note-takers.

Evaluation ‘base line’ interviews were undertaken with three of the project team members with the final one taking place shortly (see the brief interview schedule at Appendix two: baseline evaluation questionson page 19below) and are available from the project home page http://www.medev.ac.uk/ourwork/FRRIICT/. The dissemination events identified by the programme managers were diaried with one of the project team attending.

Past case studies were assembled with some analysis/documentation of short hypothetical scenarios, and a longer hypothetical scenario, is presented in Appendix three: hypothetical scenarioson page 20below. These were used to enrich the scenario database and provide material for consideration at the workshops. New scenarios were identified at the workshops and added to the list. Participants were asked to discuss their experiences of consent and develop a consensus about what might be done differently if we had our time again, and what, defensively, would be the highest ethical standard we should aim for to in order to respect the rights patients and other people in a digital age.

Email messages were sent to the MRD and OER mailing lists (see Appendix four: email to MRD and OER mailing listson page 27below), and responses have been incorporated in the results below.

A mechanism for the widget has been identified, with FRRICT tips appearing at http://www.medev.ac.uk/ourwork/scenario/frriict/. An equivalent of a simple blog enables an entry from a longer RSS feed to appear as a ‘tip of the day’, either the most recent entry or a random entry from all of those available (see Figure 2).

·     With latest entry – http://www.medev.ac.uk/feeds/scenario/frriict/

·     Random – http://www.medev.ac.uk/feeds/randomscenario/frriict/ which can work in two ways randomly choosing a ‘tip of the day’ for 24 hours, or every time the screen is refreshed.

This allows new scenarios to be added to the database over time.

Figure 2. Sample of the widget that you can add to your RSS feeds or web page. At present it only displays the headline but will be updated to display the story also.

Example of a 'tip of the day'

Figure 3. For general FRRIICT updates from the MEDEV site you can embed an RSS feed from the results of a search.

RSS feed of ethical information and updates

Advice given in the OOER Risk-kit was reviewed and updated, where appropriate (http://ooer.labyrinth.mvm.ed.ac.uk), and a series of Frequently Asked Questions on copyright, consent and defamation developed at http://www.medev.ac.uk/feeds/search/?q=faq.

Ethical / responsibility issues

Who was responsible

Consent for data recording for research and teaching whilst in clinical care is governed under schedule 3 of the Data Protection Act 1998 (HMSO, 1998a). There are also rights in the ‘performance’ under the Copyright, Designs and Patents Act 1988 (HMSO, 1988). The Acts discuss the nature of creative works/recordings plus how it is used (such as on the internet).

Responsibility for obtaining consent (or deciding if it is needed) rests with clinical staff, primarily doctors, who are always expected to act in a “patient’s best interests” (GMC 2011a):

“…requires doctors to be satisfied that they have consent from a patient, or other valid authority, before undertaking any examination or investigation, providing treatment, or involving patients in teaching and research” GMC (2006). 

GMC (2011a and 2011b) extended the guidance in Good Medical Practice:

“When seeking consent [] you should, where practicable, explain that such a recording will be made and could be used in anonymised form for secondary purposes, including in the public domain.” GMC (2011b).

GMC (2011b) permits doctors to use recordings without consent where the recording has been clearly anonymised:

“You may disclose or use any of the recordings listed in paragraph 10 for secondary purposes without seeking consent provided that, before use, the recordings are anonymised; for example, by the removal or coding of any identifying marks such as writing in the margins of an X-ray.” GMC (2011b).

We contended that the terms of this final clause potentially breaches trust or “acting in the patient’s best interests” for two reasons: firstly that the decision about what can be anonymised resides with the doctor (without patient consultation, which contradicts other guidance, see NHS, 2012) and secondly that digital technology is increasing the capacity to reverse the anonymisation.

All people enjoy privacy protection from the law (HMSO, 1998b; Council of Europe, 1950), the right to own their own ‘performance’ (HMSO, 1988) and access to information about how data about them is used (HMSO, 1998a and 2000). This means that we should extend good practice principles from the patient situation to include all people appearing in recordings on the internet to help ensure that organisations sharing data and teaching materials are maintaining high standards.

History has shown that public opinion changes, and that legal frameworks go out of date. We found that everyone we consulted (particularly those over the age of 30 and PIs/managers in the MRD projects) was interested in safeguarding privacy. Those managing teaching resources had mixed responses, illustrating a degree of confusion prevailing about current ‘best practice’.

In our very small study younger people were less concerned about recordings of themselves appearing on the internet, regardless of who owned or uploaded them or in what context. It is not yet clear if this is a genuine change of societal opinion, or merely a symptom of relative immaturity. As an aside, we predict increased use of Deed Poll identity changes in order to escape association with particular social media profiles, although it was also thought it may not be possible to escape a past identity (see I know youin the scenarios below).

The effect of time

This research revealed an issue of perceived ‘scope creep’ between what data was collected for and when it ended up. For example, one of our workshop participants was involved in the “Children of the 90’s study” (ALSPAC, 2012) that followed 14,000 pregnant mums and their children for 20 years. There was no question that the data has informed significant research findings, such as linking asthma with home cleanliness and consumption of omega 3/oily fish and healthy eyesight. This project operated with the highest ethical standards, and data requests were always screened to ensure that data was released ‘for purpose’ (not blanket released).

However those who signed up 20 years ago have seen many changes, including calls of the new funding bodies for open access to research data. Although our participant knew that data was being anonymised, their feelings of betrayal by the new political influences were strong. The representative in our study had withdrawn from ALSPAC, and so had their son, due to concerns about privacy.

The role of funders is important. They can see the potential of the amalgamation of databases (e.g. BioMedBridge) to increase research outputs by making more data sources available from one point, however people who participated may not know about this changed purpose, and may feel hurt when they find out. Data is much more likely to persist, nowadays, for long periods of time, therefore the potential for future transformations is high.

What was found

In our study we found a high degree of reliance on current practice/guidance (without seeking a higher standard, for practicable reasons) and potentially serious quality assurance issues in the collection, management and use of particularly patient-related teaching materials. This is where recordings are taken for staff training purposes rather than patient treatment.

Many patients, and other people, are very willing to participate in a recording that will be used to train healthcare staff. However we found:

·       Those responsible for taking consent and storing it were often different from those with responsibility for managing the curation and subsequent use of recordings;

·       It was difficult to be sure that someone consenting to ‘secondary purposes’ really understood how the recording might be used;

·       Recordings often harvested ‘unintended’ information;

·       Trust between clinicians and those making the recordings led to a lack of clarity of what exactly the subject or patient had agreed to;

·       Digital files persisted after the original curator had left;

·       There were limited processes for repeated ‘secondary consent’ where participants were reminded of their rights to opt-out;

·       There was no clear place for research participants to find out more about how their data or recordings had or were being used, or whether the data/recording had been destroyed.

Discussion

Workshop participants were asked if ‘privacy was dead’ and whether any core principles could be brought to the discussion. Ethical approval applications were increasing, with a lack of guidance to ethics committees of the implications of material being disseminated via the internet.

There was some concern that the language of consent was too complicated and that staff, patients and data curators were speaking at cross-purposes, especially in relation to patient consent for teaching. Where researchers were responsible for consenting research participants the processes were tightly-bound (one researcher and one patient), however there were issues where patient consent for recordings was collected and stored by clinicians under, for example, NHS protocols, but the recordings were stored, curated and used by others in teaching (two researchers and one patient). In the latter case the recording curators may be unaware of the exact terms of the consent (kept confidential by the clinician), and the clinician was possibly divorced from knowing the subsequent uses of the recordings (now classed as ‘consented’). The workshop participants discussed what would happen if the original recording technician with knowledge of the transaction changed roles.

International issues drew substantial concern. We concluded that it was not right to impose UK values and approaches on those in other countries with different expectations of rights and privacy. It was agreed that teachers and researchers should not purposefully obtain controversial recordings in another country (particularly if the reason was because you couldn’t ethically obtain them here). The principles of acting in the best interests of the subject were helpful in guiding researchers and teachers taking data and recordings abroad.

Likewise the ability of participants to make informed choices was discussed. Patients wanted to please doctors and researchers. Power relationships existed everywhere outside a double blind controlled trial. We also asked ‘did the consent process skew the recruitment of participants, favouring those with more/less capacity to understand what they were consenting to’? Ability to consent would certainly affect case-mix in medical teaching (such as those less able to consent for themselves).

Open access to anonymised research data and learning resources suggested that these would be available indefinitely on the internet. Our study found a tendency for potentially useful recordings to be copied ‘just in case’, and some participants were unaware that copies of data/teaching materials had been made in caches/downloads when simply browsing. Once digital copies were made available to researchers and students it was impossible to ensure effective subsequent removal.

Any ethically-based system for removing copies (patients wanted materials changed or taken down) would fail if internationally-distributed copies resided where values and beliefs varied. Also the purpose for which recordings may be used could change. It was suggested that all materials should be time/date stamped for re-consent, and records kept of when data had been destroyed or changed. There was a conflict of interest between the ‘best interests’ of patients and research/teaching, and this could lead to bias in samples. It was recognised that we needed to actively embed ethics in HE programmes (not rely on instinct/custom and practice), by increasing the thoughtfulness of researchers about the purpose of ethics, moving away from ‘box-ticking’.

If we accepted that people had a right to have a say in how data or recordings of them were used, and that they cannot consent in perpetuity, then mechanisms needed to be established in order to enable data subjects to voice their opinion, and for users of recordings to signpost where materials were ethically sourced. Workshop participants spent time trying to identify how to empower patients and other people with the information they would require to self-manage access to recordings of them on the internet, without burdening participants with continuous monitoring (as in ALSPAC, 2012). Workshop participants disagreed about the practicality and acceptability of re-consenting patients. Was it right to attempt to re-consent a patient who was now well, and trying to forget a challenging time of their life?

In all cases good information about what recordings existed, where they were being used and how they were anonymised was considered important.

Solution

Workshop and survey participants had anecdotes and examples of lapses of good consent processes especially in relation to the development of teaching materials. They found it difficult to imagine future technological developments and contribute new scenarios, however they generally agreed with and refined some of the scenarios presented.

Proposals for ‘consent commons’ (Williams, et al., 2010), similar to Creative Commons (CC), were favourably considered. Consent commons would provide an ethical ‘licence’, greatly increasing the confidence with which recordings or data sets could be re-used, and for what purpose. Consent commons would provide a suite of icons identifying the wishes of the subject. It would also provide, potentially, an end date for the use of that resource. Recordings could be marked “used with consent”, similar to “used with permission” in the copyright world.

The group also strongly favoured introduction of a mechanism to ‘take down’ or withdraw materials posted on the internet. Technologies did not yet exist however participants considered that a system similar to one that alerted you to new software could also alert you when you were about to access a resource that had been ‘taken down’. Limitations included that it was an opt-in process.

The second workshop group proposed a database that had many similarities with the anticipated Digital Copyright Exchange, where patients could see for themselves where information about them as being used and register a ‘change request’ (see Figure 4).

Figure 4. Specification diagram for a ‘Digital Consent Exchange’ where rights and preferences are held alongside registered updates in the way in which consented materials are being used. [Credit: adapted from Dan Plummer’s specification for the Digital Copyright Exchange, ©2012 Newcastle University].

Digital consent exchange example

In this system updated information about where consented data and recordings were being used could be recorded, to enable participants to keep abreast of how information was being curated, or if the purpose had changed, if they wished to. Curators may be able to access the original terms of the consent, and current variability in consent management minimised. This system was relatively low maintenance and responsibility lay with recording subjects, and it was up to them whether they accessed it or not.

Lessons learned

This was a small study positioned between research and teaching, that aimed to help researchers and teachers adopt a higher standard of ethical approach to making data and teaching materials available on the internet by considering the past and future especially the pace of technological change. Limitations included the sample size of those consulted (MRD and OER mailing lists, workshop participants, project staff). It was always intended that the recommendations arising from this qualitative study needed to be interpreted cautiously (see also Appendix three: hypothetical scenarioson page 20below).

Without resorting directly to science fiction it was challenging to predict how the evolving future technologies would impact on consent, based on the pace of technological change from the past. We were sure that network bandwidth, storage (disk or otherwise), and processing power would continue to increase (Moore’s law), as would services able to consume the extra capacity. Costs would fall. Researchers needed to consider how future technologies might evolve in their area.

We found a worrying quality management issue especially in relation to teaching materials that were consented by one group (such as clinicians who followed the appropriate procedures) and the results used by another (such as teaching resources staff). Even when these two groups were working together assumptions were made by both about the exact details of the consent and how recordings would be processed and subsequently used in teaching.

Our workshops concluded that patients in particular were remarkably trusting and willing to help, but participants agreed that society was more likely now to sue for breaches in ethical practice (than in the past), and that the use of social media had forever changed notions of privacy. There was pressing need for new technology to support ethical approaches in ICT.

We had the following recommendations:

·     Mechanisms for a process for ‘take down’ be developed;

·     Implementation of ‘consent commons’;

·     Implementation of a ‘one stop shop’ (possibly based on distributed open data management) for transparently providing information about where open data and open teaching materials were in use.

We welcomed an opportunity to present these findings in more detail to the FRRIICT community during the dissemination activities.

Attribution

Authors: Professor Megan Quentin-Baxter, Newcastle University, Dr Jane Williams, University of Bristol, Suzanne Hardy, Newcastle University and Reverend Bryan Vernon, Newcastle University.

Cover image: ©2004-6 Troels Eklund Andersen http://lukket.dk/homecomputer/ (used with permission). Elements of the picture such as Edward G Wellmeier; submarine control room; DEC LA36 DECwriter II teletype terminal; Crosley Ridgewood 21 TV are © to their respective photographers/owners. All rights reserved.

Acknowledgements: This award was supported by the Framework for Ethical Research ICT (FRRIICT) in collaboration with the Partnership Resource Fund from the RCUK Horizon Hub grant (grant EP/G065802/1). Grateful thanks are given to the funders and programme managers, particularly Dr Grace Eden, Oxford e-Research Centre, University of Oxford, for her support and advice. Thanks to those on the MRD and OER mailing lists who responded, especially Simon Hodson, Chris Morris, Louise Corti and David Kernohan. Thanks also to Jason Miles-Campbell from JISC Legal and Naomi Korn from Naomi Korn Associates. Particular thanks go to the workshop participants and project partners, Jane, Suzanne and Bryan.

With thanks also to the Institute for Medical Ethics (IME), Newcastle University (Newcastle), and University of Bristol (Bristol) for their support of this project.

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