TOPIC GUIDE: Medical data sharing
"Medical data sharing is a threat to our privacy"
PUBLISHED: 26 Aug 2016
AUTHOR: Anwar Oduro-Kwarteng
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Last spring, the confidentiality of people’s medical records came under the spotlight, when it emerged that Google DeepMind had entered into an agreement to have access to sensitive patient data from the Royal Free, Barnet and Chase hospitals [Ref: Telegraph]. The Royal Free trust insists that the agreement will allow the records to be used to develop a new system which will alert patients that are at risk of acute kidney injuries [Ref: Telegraph], but many are concerned about the consequences that such medical data sharing will have on the privacy of patient records. Similarly, the ethics of medical data sharing in a digital world were raised in the controversy surrounding the care.data scheme [Ref: NHS England]. Care.data was proposed by the government as a central database for patient data from all NHS care providers for secondary uses, such as epidemiological research, and public health prediction, but the scheme has since been cancelled due to privacy concerns [Ref: Guardian]. As digital technology embeds itself into daily life ever more deeply, many feel we should re-examine the debate about privacy and medical ethics. Supporters of medical data sharing argue that the potential research gains which access to NHS data could yield far outweigh any potential risks to privacy [Ref: Financial Times], and claim that it would be wrong to let these concerns get in the way of medical progress. However, critics note that, “there is a point of principle at stake here about who can or should see our medical records – our most private data.” [Ref: Telegraph] Amid the competing arguments, how should we view medical record sharing? Is it a vital tool for the modern age, giving a range of stake holders the ability to improve patient care? Or does the arrival of big data and tech companies such as Google into the health arena, pose a serious threat to privacy?
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Medical data sharing DEBATE IN CONTEXT
This section provides a summary of the key issues in the debate, set in the context of recent discussions and the competing positions that have been adopted.
The UK is the only country in the world which has health data for the life-time of almost every person in the country since 1948, because of the foundation of a National Health Service [Ref: CPRD]. Advocates of medical data sharing note that large data sets helped to establish the links between smoking and lung cancer, and also helped to debunk the link between the MMR vaccine and autism [Ref: New Scientist]. The use of health data is vital in studying genetic information, they argue, as it helps scientists to understand the causes of common diseases in the population as a whole, as well as empowering “commissioners to ensure the highest standards of care and clinical safety are met” [Ref: NHS England]. The ever improving potential of technology to gather medical information on a huge scale is one of the reasons that many are excited by the prospect of medical data sharing. For example, Moorfields Eye Hospital in London has recently agreed to give Google’s DeepMind one million digital eye scans from patients, in the hope that the computer learning technology will spot early indicators of future sight loss [Ref: Telegraph]. In addition, responding to the recent decision to abandon the care.data scheme, columnist Polly Toynbee outlines the good that big data can do for health care: “Data trawls unexpectedly revealed, for instance, that patients taking metformin for type 2 diabetes had less chance of developing cancer. No one knows why, but it opened up a whole new area of cancer research.” [Ref: Guardian] However, critics point out the potential problems of big data for patient confidentiality. In 2014 it was found that NHS patient data was being sold to companies in industries as diverse as pharmaceuticals and charities, to consultancy firms and universities [Ref: Evening Standard], and in the same year the NHS were found to have sold 13 years’ worth of medical data, covering 47 million patients, to organisations acting on behalf of insurance companies [Ref: Telegraph]. For privacy activist Phil Booth: “This is precisely the danger when you create a giant database of highly sensitive information about people – all sorts of other people want to go rifling through it, including the government. There’s always another good reason to go digging, but no one thinks of the catastrophic breach of trust this represents.” [Ref: Guardian]
The ethics of consent
Modern medical ethics emphasises the principle of informed consent, both in research and in clinical practice. The very first point of the Nuremberg Code - a set of research ethics for human experimentation - states that: “The voluntary consent of the human subject is absolutely essential” [Ref: Nuremberg Code]. However, the care.data scheme came under intense scrutiny from those who argue that the issue of consent had been taken too lightly [Ref: Telegraph], with similar concerns about whether consent was sought to share patient records with Google [Ref: New Scientist]. In light of this, New Scientist magazine is quick to praise the potential of technology companies to shed light on important medical trends, but underlines that consent is paramount, because: “If we are to hand Google et al, ever more data, then we should insist they ask us first, and tell us what they want it for.” [Ref: New Scientist] Moreover, technology writer Subhajit Basu is critical of the way that Google, together with the NHS, have sought to “extend the definition of implied consent to fit [their] purpose” [Ref: Wired], because we must remember that: “Consent is a key concept in the provision of healthcare – this is true across ethical, legal and practical dimensions.” [Ref: Wired] But for some supporters of medical data sharing, those who criticise data sharing on this scale are “consent fetishists” [Ref: The Times], suggesting that: “Public health…research will be rendered impossible if individual consent for all secondary uses of health data becomes the norm.” [Ref: Journal of Epidemiology and Community Health]
The greater good Vs privacy
The contemporary discussion about medical record sharing also encompasses the tension between individual privacy, moral responsibility and the greater good. “The widely accepted idea that my right to privacy always trumps your right to the benefits that might accrue from data sharing, needs to be challenged on ethical grounds” [Ref: Guardian], according to author and writer Roger Taylor. He argues that it is a moral imperative to pursue medical record sharing, because of the impact it could have on all of our lives. Similarly, one commentator observes that: “To be sure, privacy needs protection from rogues of all kinds – but we are at risk of losing balance between benefit and risk”, concluding that: “There is dark age thinking in too much fear of data collection.” [Ref: Guardian] But opponents remain unconvinced by these arguments, maintaining that: “Right now, medical confidentiality is under serious threat” from patient record sharing, because often these schemes make it difficult for patients to opt out if they wish to [Ref: Wired]. They accept that there are potential benefits to record sharing, but argue that: “While there is much public good that can come from open source data sets, ultimately you should be in charge of how your personal information is shared and used” [Ref: Wired]. So are critics right to worry about issues of privacy and consent with medical record sharing? Or do we have a duty to embrace the potential benefits to us all that technology and data sharing may bring?
It is crucial for debaters to have read the articles in this section, which provide essential information and arguments for and against the debate motion. Students will be expected to have additional evidence and examples derived from independent research, but they can expect to be criticised if they lack a basic familiarity with the issues raised in the essential reading.
Department of Health 6 July 2016
Subhajit Basu Wired 11 May 2016
New Scientist 4 May 2016
Phillip Johnston Telegraph 20 January 2014
Phil Booth Open Democracy 13 August 2013
Roger Taylor Guardian 19 July 2016
Polly Toynbee Guardian 7 July 2016
Hugo Rifkind The Times 25 February 2014
Clare Gerada The Times 8 February 2014
BBC News 19 July 2016
Ian Sample Guardian 28 August 2012
Definitions of key concepts that are crucial for understanding the topic. Students should be familiar with these terms and the different ways in which they are used and interpreted and should be prepared to explain their significance.
Useful websites and materials that provide a good starting point for research.
The Conversation 12 July 2016
Natasha Lomas Tech Crunch 9 July 2016
Sarah Knapton Telegraph 7 July 2016
Hal Hodson New Scientist 8 June 2016
Randeep Ramesh Guardian 14 May 2016
Neil Lawrence Guardian 5 May 2016
Michael Rundle Wired 25 February 2016
Sarah Boseley & Paul Lewis Guardian 24 February 2016
Tim Kelsey NHS England 2 May 2014
Evening Standard 3 April 2014
David Aaronovitch The Times 27 March 2014
Andrew Ward Financial Times 30 January 2014
Dr John Parkin Guardian 24 January 2014
Nature 15 January 2014
Polly Toynbee Guardian 23 August 2013
Martin Bobrow Nature 7 August 2013
Geraldine Barrett & Janet L Peacock Journal of epidemiology and community health
Links to organisations, campaign groups and official bodies who are referenced within the Topic Guide or which will be of use in providing additional research information.
IN THE NEWS
Relevant recent news stories from a variety of sources, which ensure students have an up to date awareness of the state of the debate.
BBC News 6 July 2016
Guardian 6 July 2016
Telegraph 5 July 2016
Telegraph 5 June 2016
BBC News 3 May 2016
Telegraph 3 May 2016
Independent 3 May 2016
The Times 21 March 2014
Telegraph 24 February 2014
Telegraph 23 February 2014
The Times 8 February 2014
Guardian 6 February 2014
Telegraph 29 October 2012
Guardian 5 December 2011
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