Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Email: [email protected] Website: http://www.nuffieldbioethics.org ISBN: 978-1-904384-21-2 October 2010 To order a printed copy, please contact the Nuffield Council on Bioethics or visit the website. European countries (EU and non-EU) £10 per report (where sold) Countries outside Europe: £15 per report (where sold) Developing countries: Free © Nuffield Council on Bioethics 2010 All rights reserved. Apart from fair dealing for the purpose of private study, research, criticism or review, no part of the publication may be produced, stored in a retrieval system or transmitted in any form, or by any means, without prior permission of the copyright owners. Indexed by: Dr Laurence Errington Printed in the UK by: Nuffield Press 21 Nuffield Way Abingdon Oxfordshire OX14 1RL http://www.nuffield.co.uk Web references throughout this report were accessed August 2010 Medical profiling and online medicine: the ethics of 'personalised healthcare’ in a consumer age Nuffield Council on Bioethics Professor Albert Weale FBA (Chair) Professor Hugh Perry FMedSci (Deputy Chair) Professor Steve Brown FMedSci Professor Roger Brownsword Dr Amanda Burls Professor Robin Gill Professor Sian Harding FAHA FESC Professor Ray Hill FMedSci Professor Søren Holm Professor Christopher Hood FBA* Dr Rhona Knight FRCGP Professor Graeme Laurie FRSE Dr Tim Lewens Professor Ottoline Leyser CBE FRS Professor Anneke Lucassen Professor Alison Murdoch FRCOG Dr Bronwyn Parry Professor Nikolas Rose Professor Dame Marilyn Strathern FBA*** Professor Joyce Tait CBE FRSE** Dr Geoff Watts FMedSci Professor Jonathan Wolff * co-opted member of the Council while chairing the Working Party on Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age. ** co-opted member of the Council while chairing the Working Party on New approaches to biofuels. *** co-opted member of the Council while chairing the Working Party on Human bodies in medicine and research. iii Secretariat Hugh Whittall (Director) Tom Finnegan Katharine Wright Kate Harvey Harald Schmidt Varsha Jagadesham Dr Alena Buyx Sarah Bougourd Caroline Rogers Carol Perkins Catherine Joynson Audrey Kelly-Gardner The terms of reference of the Council are: 1. to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern; 2. to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3. in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation and the Wellcome Trust iv Acknowledgements The Council would like to thank the members of the Working Party for their time and contributions to this report. We would also like to express our appreciation to the peer reviewers who provided expert commentary on early drafts of the report; to those who attended our fact-finding meetings; and to those who responded to the consultation. Additionally, we extend our thanks to the team at the Harvard University Program in Ethics and Health, in particular Professor Daniel Wikler and Ms Francesca Holinko, for their work on the joint workshop held with the Council in May 2009. Members are also grateful to those who provided advice on specific areas of the report, including Professor Edward Alan Miller for the production of an evidence review on the provider-patient relationship in the field of telemedicine; the Royal Pharmaceutical Society of Great Britain for providing comments on an early draft of part of the report; and Dr Michael Manolakis and Dr Matthew Wynia for providing valuable advice on online pharmaceutical purchasing and personal health records, respectively. For more information on contributions to the report and our method of working, see Appendix 3. v Foreword In the two years or so that it took to write this report, news media continually threw up stories about new ways of getting access to health information and services online. Many news items emerged as well about developments in testing and scanning technologies that held out the promise of far greater ability to predict susceptibility to disease and even length of life than any earlier generation had known.1 And those two developments are linked in the kinds of tests that operate largely online, such as genetic testing whose only non-virtual element is that of the buyer taking a saliva sample and mailing it off to be tested. What are we to make of this brave new world? Some are entranced by the prospect of encounters with the healthcare system that increasingly take place online and that embrace an ever-expanding array of tests, scans and complex interactive communications systems. Powerful claims about the ability of such developments to transform and indeed extend our lives are made by enthusiastic researchers and companies in the forefront of those changes. But others see those developments in a much less attractive light, as meaning ever-greater medical penetration of everyone’s lives, with new forms of testing and scanning leading either to a medical variant of the Calvinist doctrine of predestination or to more and more health anxiety, or both. Egalitarians will worry that more individualised predictive testing could threaten the ‘risk pooling’ embodied in traditional public welfare systems, while individualists will fear the opposite outcome, namely that such individualised prediction could lead to the collapse of established systems of private health insurance, such that ‘socialised medicine’ expands rather than contracts. Others worry about the greater medicalisation of human life that goes along with ever-more scanning and testing and online health activity. They fear a world resembling that of Jules Romains’ egregious Dr Knock, for whom (long before today’s ideas about so-called personalised medicine) healthcare was to be considered as a form of religion2 and whose academic thesis ‘On Imagined States of Health’ took for its epigraph the statement: ‘Those who are well are sick people who don’t know it’.3 And there are other people who firmly take the more fatalistic view epitomised by the Roman poet Horace whose famous motto carpe diem sums up the argument that it is better to live for the present than to try to foresee the future.4 The view we have generally taken in this report is that these developments may indeed have the potential radically to transform healthcare, but that potential has yet to be realised. Of the idea of personalised healthcare, it could almost be said that ‘Only the future is certain. The past is always changing,’5 since bold visions of the ability of new technology to bring about a new era of personalised, predictive and preventive medicine have been canvassed for nearly two decades now. Perhaps we are still seeing the smoke of a fire that has not yet really kindled.6 But even if the information and power to take control of our health afforded by these developments does indeed turn out to be the modern equivalent of Apollo’s gift of prophecy to Cassandra in classical mythology, it must be recalled that such gifts have their accompanying problems and ethical challenges. In this case, they raise challenging issues of how far the principle of ‘consumerism’ can properly be carried in healthcare, and what responsibilities individuals should take for their health and healthcare. Some 1 For example, over the course of the Working Party’s two-year lifespan, there were about 300 news stories in the Anglophone press and journals alone that were significant and highly relevant to the main themes of our report. That number would certainly rise into the thousands if we included all the news stories and journal articles across the world that were concerned with body imaging, genetic profiling and accessing health information and services online. 2 Requiring ‘confession’ and commitment to the spread of ‘l’esprit pharmaco-médical’. 3 ‘Les gens bien-portants sont des malades qui s’ignorent,’ ludicrously attributed to the experimental physiologist Claude Bernard. See: Romains J (Louis Farigoule) (1973) Knock ou le triomphe de la médicine Alton JB (Editor) (London: Longman), p39. 4 ‘Tu ne quaesieris – scire nefas – quem mihi, quem tibi finem di dederint…Sapias, vina liques, et spatio brevi spem longam reseces…carpe diem, quam minimum credula postero’ Horace, Odes 1.11. 5 In Paul Flynn’s epigram, coined in a quite different context: Flynn P (1999) Dragons Led by Poodles (London: Politico’s), p24. 6 An mac air an spàrr, ‘s a mhàthair gun bhreith’ (‘the son on the roost and the mother unborn’), in the words of the Gaelic proverb. vii people think there are long-term trends in modern societies towards ever-greater ‘consumerisation’ and ‘responsibilisation’; but whether or not you believe that (the evidence is contestable), there are certainly some perplexing ethical challenges represented by the new issues of consumer choice and personal responsibility that are raised by the emerging world of medical profiling and online medicine. Writing this report has been a lengthy and arduous job, during which many tricky issues had to be thought through, and I would like to thank all those who helped to produce this document: the members of the Working Party, the Council, the secretariat, particularly Caroline Rogers, Tom Finnegan and Harald Schmidt, those who responded to our consultation document, and those who came to our fact-finding meetings or responded to our various queries.