The Unwanted Gaze And Imaginary Information Bodies
Patient consent has been regarded as playing an important regulatory role in protecting individuals from invasions to their bodily integrity and privacy. Craig Purshouse drew my attention to the role of the common law in protecting "autonomy interests" in biomedical and medical law - Liability for lost autonomy in negligence: Undermining the coherence of tort law?(2015) 22 Torts Law Journal pp.226-249 (subscription). He remarked, while we were having lunch, on how judicial thinking was embracing notions of consumerism and consumer models of health care - consider his opening shot across the bow - "In modern law medical paternalism no longer rules." (How should autonomy be defined in medical negligence cases? Clinical Ethics 0(0) 1–8) Craig is not alone in echoing these thoughts but they received the imprimatur of the Supreme Court in Montgomery (Appellant) v Lanarkshire Health Board (Respondent) (Scotland) UKSC 11 (para 75-76):
They are also widely treated as consumers exercising choices: a viewpoint which has underpinned some of the developments in the provision of healthcare services.
Other changes in society, and in the provision of healthcare services, should also be borne in mind. One which is particularly relevant in the present context is that it has become far easier, and far more common, for members of the public to obtain information about symptoms, investigations, treatment options, risks and side-effects via such media as the internet (where, although the information available is of variable quality, reliable sources of information can readily be found), patient support groups, and leaflets issued by healthcare institutions.
The reflection on the evolving doctor-patient relationship forms a continuum with the socio-technical developments in the medical and health care environment. The patient's right model, which assumes greater prominence than the doctor as expert model is now converging with market orientated consumerist models. I do not want to delve too much on the provenance of these models, other than to raise an intriguing question, which forms the basis of a work in progress to be presented at the Law School's, Health and Law Regulation Unit Seminar - what is the role of consent as individuals increasingly use social media and health fitness trackers and apps?
The research question for my presentation is more nuanced and targets the growth in wearables and health fitness trackers and the deluge of personal health information flowing through social media.
The tsunami of personal health information available on social media, mobile health applications and wearable technologies, offers the opportunity for not only transforming healthcare but medical services and the healthcare industry. Access to health and fitness information is seen as critical to unlocking its value for customised healthcare and public health goals. Privacy advocates, while accepting the promise offered by socio-technical imaginaries, maintain that consent and privacy values must not be eroded. The protracted arguments regarding opacity, access and use have produced a stalemate. The text representing the informal agreement reached on 15th December 2015 on the final draft of the EU General Data Protection Regulation gives no hint of simmering tensions nor provides any guidance on how the stalemate is to be broken. One consequence of the uncertain state of affairs in the interaction between privacy, science and technology, within the context of digital health publics is that Ethics Committees and Review Boards are likely to be left with the burden of threading together answers incrementally by unravelling the legal puzzle of who should have access to what type of information and how health information should be used. This is not ideal. The uncertain state of affairs also means that in the immediate aftermath of 15th December, consent when obtained is likely to be attenuated by contractual agreements, design nudges, predatory profiling, cross-device monitoring and poor enforcement.
An argument that I want to run, is likely to be along the following lines:
If value in digital health information is to be unlocked, we need to contextualise our discussion of data protection and privacy rules within the settings inhabited by science, technology and culture.
The flows of personal health information mediated by technologies transgress conventional wisdoms about autonomy in relation to our bodies.
It is not only normative issues that must be integrated into policy debates, but those relating to ontologies of bodies of health information.
The polarised debates underestimate the significance of the distinction between bodies of health information and health information in bodies in digitalised spaces and which perhaps continues to undermine attempts to develop narratives that (re)imagine the role and value of concepts such as consent in these highly maleable digital spaces.
The arguments to be developed in this work in progress are part of a broader debate about business models and algorithms. It seems that technical and design features of wearables and social media platforms, for example, embed conditions that grate against the assumptions we make about autonomy and consent as grounds for legitimate and ethical use of consumers personal health information. A scholarly investigation of the subject area is timely and relevant, not least to ensure that we do not end up treating paternalism and autonomy as trade-offs and as a consequence embrace consumerist models with their correlative assumptions and values. This work in progress is part of the project - Justice in Algorithmic Robes.