Government should do more to help people who use online health services

The Government should do more to help people find trustworthy health websites and use online health services safely and effectively, says a new report on the ethics of ‘personalised healthcare’. The Nuffield Council on Bioethics warns that whilst online health information and services are convenient to use and extend choice, they could mislead, confuse or create unnecessary anxiety for the people who use them.To minimise these potential harms the Council is calling on the Government to set up an accreditation scheme for online health record providers, for DNA testing and body scanning services to be better regulated, and for doctors to receive training on advising patients who use the internet to look for health information and to buy medicines online.“The internet is now often the first port of call for people to find out more about their health. People need to know where they can get accurate health information, how to buy medicines online safely, and how any personal information about their health posted online might be used,” said Professor Christopher Hood, chair of the Working Party that produced the report.The report also looks at direct-to-consumer personal DNA testing services that claim to predict your risk of developing diseases in future, and body scanning services which are offered to healthy people as a check-up. These services are promoted and can be booked online.“The results of personal DNA testing and body scanning are often hard to interpret, unreliable and may cause people unnecessary anxiety,” says Professor Hood. “Better regulation is needed to ensure people are fully aware of the limitations of these services.”The report, which considers a range of new technologies and services that are promised by their providers as offering more ‘personalised healthcare’, makes a number of recommendations for policy. In each case, the need to protect people from harm and the need to protect people’s personal information is weighed up against the need to give people freedom to make their own choices.

Health information websites

“We recommend that all websites offering health information and advice should state where the information originates and what it is based upon, who wrote it, and how the author or organisation is funded. Advertisements for medicines and products should also be clearly distinguished from other types of information,” said Professor Hood.The Council concludes that the best websites for people to use when looking for health advice are based on high quality peer-reviewed research, from independent not-for-profit organisations, and are independently evaluated and continuously updated.It says the NHS websites and the websites of the National Institute for Health and Clinical Excellence (NICE) generally meet these criteria.In 2009 an Oxford Internet Survey found that in 2007 and 2009, 68% of British internet users had used the internet to look up health information.

Online pharmacies

The Council endorses Great Britain’s registration scheme for online pharmacies but recommends that the Government should make more information about it available, as people don’t always know that the scheme exists.“Britain is leading the way when it comes to online pharmacies and patient safety, but there is nothing stopping people buying medicines from internet pharmacies based in other countries that are not regulated in the same way,” said Professor Nikolas Rose, one of the authors of the report.“If you choose to buy medicines from a website that is not certified in the same way as registered online pharmacies in the UK, you risk buying harmful, fake or low quality products. You could also miss out on advice from doctors and pharmacists about adverse effects and interactions with other medicines you may be taking.” added Professor Rose.The Council recommends that the UK registration scheme should be mirrored elsewhere in order to restrict the sale of medicines, including antibiotics, over the internet.In 2008 approximately two million people in Great Britain were regularly purchasing pharmaceuticals online, both with a prescription from registered UK pharmacies and without prescriptions from other websites. A 2009 survey found that more than one in seven adults asked had bought a prescription-only medicine online without a prescription.

Online health records

Online health record services such as Google Health and Microsoft HealthVault allow people to create an account for storing information about their current and past health problems. The full versions of these services enable people to share their data with doctors and other service providers, although this is only offered in the US at present. The NHS currently intends to offer people in England an online summary of their health records through its HealthSpace website.“These services could give people a convenient way of taking more control of their health records. However, it is paramount that people are fully aware of how their personal information is going to be stored and used before they sign up,” said Professor Hood.The Council recommends that Governments should set up an accreditation system for online health record providers to improve transparency and standards on how personal information is stored and used. Companies should also establish systems to safeguard the confidentiality of data if they change ownership or go into administration.

Direct-to-consumer personal genetic profiling services

Direct-to-consumer personal genetic profiling services are often marketed online to healthy people as a way of finding out their risk of developing serious conditions such as diabetes, heart disease, Parkinson’s disease and some cancers, through the analysis of a DNA sample they provide.“Commercial genetic profiling services may seem to be providing more choice to consumers, but the test results can be unreliable and difficult to interpret and they are offered to people with little or no genetic counselling or support” said Professor Rose.“People should be aware that other than prompting obvious healthy lifestyle choices such as taking more exercise, eating a balanced diet and reducing alcohol consumption, the tests are unlikely to inform them of any specific disease risks that can be significantly changed by their behaviour.”Currently there is no overarching system of regulation for personal genetic profiling. The Council says that claims that these services are leading to a new era of ‘personalised healthcare’ are overstated and should be treated with caution. It recommends that regulators of these services should request more evidence from companies to back up the claims they make about the predictive value of their tests.

Direct-to-consumer body scans

The report also considers direct-to-consumer CT, MRI and ultrasound body scans as a form of ‘health check-up’ for people without pre-existing symptoms.Whole body CT scans carry serious physical risks from the radiation involved. The Council says that the commercial sale of whole body CT scans as a health check for people without prior symptoms of illness should be banned, as any potential benefits do not justify the potential harms caused by the radiation.The scans may be hard to interpret and they often show up ‘abnormalities’ which are actually harmless, but which could lead to undue anxiety or further tests or treatments which carry risks. The report also recommends that GPs should receive specific training on giving advice to patients about direct-to-consumer body imaging services, and about making referral decisions on the basis of these tests.

NOTES TO EDITORS

1 For further information contact:

Sarah BougourdCommunications OfficerNuffield Council on Bioethics28 Bedford Square, London WC1B 3JSTel: +44 (0)20 7681 9619Mob: +44 (0)7821 449 725Email: sbougourd@nuffieldbioethics.orgWeb: www.nuffieldbioethics.org

2 Background

The Nuffield Council on Bioethics established a Working Party in 2008 to examine the ethical issues raised by new developments and technologies that promise us more personalised healthcare. The group included members with expertise in medicine, science, law, philosophy, ethics, and health policy.To inform its deliberations, the Working Party:

• held a public consultation to gather views from a wide range of people including those using or contemplating using these services, those involved in providing them in the public and private context, researchers, academics, regulators, policy makers and others.
• held a series of ‘fact-finding meetings’ with scientists, providers of healthcare services and regulatory bodies, including a joint workshop with the Harvard University Program in Ethics and Health.

The Working Party developed an ethical framework consisting of five ethical principles against which each of these new developments were examined, and on which the recommendations are based. The principles are:1. private information should be safeguarded2. individuals should have freedom to make their own choices3. the state should act to reduce harm4. public resources should be used fairly and efficiently5. social solidarity (the sharing of risks and protection of the vulnerable)The Working Party also looked at the implications of consumerisation in healthcare and of people being encouraged to take more personal responsibility for their health.The Working Party’s conclusions and recommendations are published today in the report Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age.

3 The report

Copies of the report Medical profiling and online medicine: the ethics of ‘personalised’ healthcare in a consumer age will be available to download from Tuesday 12 October 2010. To request an advance copy on 11 October please contact Sarah Bougourd (see above).

4 Further information and references for statistics

Health information websitesThe Internet in Britain 2009 (p20) - http://www.oii.ox.ac.uk/research/oxis/OxIS2009_Report.pdf.Online pharmacies The General Pharmaceutical Council replaced the Royal Pharmaceutical Society of Great Britain as the regulator for pharmacists, pharmacy technicians and pharmacy premises in England, Scotland and Wales, on 27^th September 2010. For more information please see http://www.pharmacyregulation.org.2008 study from the Royal Pharmaceutical Society of Great Britain ‘Millions risk health buying drugs online’. The web link is currently unavailable due to the change of organisation outlined above - an electronic copy is available on request.2009 survey - ‘Get Real, Get a Prescription’ public awareness campaign, a partnership between Pfizer, the Medicines and Healthcare products Regulatory Agency, the Royal Pharmaceutical Society of Great Britain, The Patients Association and HEART UK. The web link is currently unavailable due to the change of organisation outlined above - an electronic copy is available on request.

5 Video footage

A video interview with Professor Christopher Hood and Professor Nikolas Rose is available on request, for more information please contact Sarah Bougourd (see above).

6 Working Party members

Professor Christopher Hood FBA (Chair)Gladstone Professor of Government and Fellow, All Souls College, University of OxfordProfessor Kay-Tee Khaw CBE FRCPProfessor of Clinical Gerontology, University of Cambridge School of Clinical Medicine, Addenbrooke's HospitalDr Kathleen LiddellSenior Lecturer, Faculty of Law, University of CambridgeProfessor Susan Mendus FBAProfessor of Political Philosophy, University of YorkProfessor Nikolas RoseMartin White Professor of Sociology, BIOS Centre for the Study of Bioscience, London School of Economics and Political ScienceProfessor Peter C SmithProfessor of Health Policy, Imperial College Business School, LondonProfessor Sir John Sulston FRSChair, Institute of Science, Ethics and Innovation, University of ManchesterProfessor Jonathan WolffProfessor of Philosophy, University College LondonProfessor Richard WoottonDirector of Research, Norwegian Centre for Telemedicine and Integrated Care, Tromsø, Norway

7 About the Nuffield Council on Bioethics

The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics.The Council has previously reported on the ethical issues raised by pharmacogenetics, the study of the effects of genetic differences between individuals in their response to medicines. See: Pharmacogenetics: ethical issues (published September 2003) available at http://nuffieldbioethics.org/project/pharmacogenetics/