The Nuffield Council on Bioethics today launched a consultation on the ethics of services and technologies that serve to remove the GP from health care, such as commercial DNA testing and body imaging, and online health care.
“Cutting out the GP may sometimes be a good thing, providing us with convenience, privacy and control over our health,” said Christopher Hood, Chair of the study and Professor of Government at the University of Oxford. “But, there is not much regulation of these new services and we may be getting information that causes more harm than good.”
In the UK, DNA tests for disorders such as Huntington's disease have been available on the NHS for some years. But now there are companies offering to analyse our DNA for a range of health risks on a commercial basis. The tests are marketed as a way of reassuring us, encouraging us to change our lifestyles or seek appropriate treatment. But the disease risks associated with some of the genes being tested have not been well researched, potentially leaving people with misleading or inaccurate results – either giving them false reassurance or sending them in alarm to their GPs when there may be nothing wrong.
“We need to think carefully about the value of these services and we would like to hear about people’s experiences of using them,” said Christopher Hood.
We can also now bypass our GPs and go to private health care companies for MRI or CT scans, which claim to look for abnormalities that indicate disease. These ‘body MOTs’ can cost several thousand pounds, but tend to throw up large numbers of false positives, where the test wrongly indicates a problem. CT scans also come with significant radiation risks. There is currently no overarching regulation of commercial DNA testing or body imaging.
The internet provides us with numerous other opportunities to avoid going to our GP. Websites that offer diagnoses have existed for several years, and in the US you can also now store all your health records on the internet, on websites that aim to put you ‘in charge of your health information’. You can choose who you share your information with, but there are concerns about the privacy of these sites and who else might gain access. After receiving health advice on the internet, you are then able to buy prescription medicines from online pharmacies.
“The questionable quality of some medicines bought over the internet is a cause for concern, as is the possible link to increases in prescription drug abuse,” said Christopher Hood. “But such concerns may be outweighed by the convenience offered to those with long term conditions. We want to hear what people think.”
The Council would like to hear the views of 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. Responses to the consultation will be carefully considered, and a report setting out the Council’s findings will be published in spring 2010.
NOTES TO EDITORS
1. For further information contact
Nuffield Council on Bioethics
28 Bedford Square
London WC1B 3JS
Tel: +44 (0)20 76819619
Mob: +44 (0)7747 635863
2. Consultation paper
A consultation paper, Medical profiling and online medicine: The ethics of ‘personalised’ health care in a consumer age, which provides background information and asks a number of questions for respondents to consider, will be available on the Council’s website on 21st April 2009. Advance copies are available to journalists on request.
3. Working Party members
Professor Christopher Hood FBA (Chair)
Gladstone Professor of Government and Fellow, All Souls College, University of Oxford and Director, ESRC Public Services Research Programme
Professor Kay-Tee Khaw CBE FRCP
Professor of Clinical Gerontology, University of Cambridge School of Clinical Medicine, Addenbrooke's Hospital
Dr Kathy Liddell
Lecturer, Faculty of Law, University of Cambridge
Professor Susan Mendus FBA
Professor of Political Philosophy, University of York
Professor Nikolas Rose
Martin White Professor of Sociology, BIOS Centre for the Study of Bioscience, London School of Economics and Political Science
Professor Peter C Smith
Professor of Health Economics, Centre for Health Economics, University of York
Professor Sir John Sulston FRS
Chair, Institute of Science, Ethics and Innovation, University of Manchester
Professor Jonathan Wolff
Head of the Department of Philosophy, University College London
Professor Richard Wootton
Director, the Scottish Centre for Telehealth
4. 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. For further information see: www.nuffieldbioethics.org
5. Terms of Reference of the Working Party
1. To identify and consider the ethical, legal, social and economic issues that arise in the application of new health and medical technologies that aim to deliver highly individualised diagnostic and other services.
2. To describe and analyse, by means of case studies, developments in medical research and practice and other factors giving rise to the development of personalised health care.
3. To consider, in particular:
(a) Arguments about the scientific significance, reliability and predictive value of particular personalised services;
(b) implications for equity in health in relation to who will benefit most from particular personalised services, and for whom they may be harmful;
(c) the impact of personalised services offered by private providers;
(d) the tensions that might arise between increasing expectations for highly tailored care with the need to provide health care for all in the NHS;
(e) the extent to which personalised services can be offered as part of a fair and efficient operation of private and public health care systems;
(f) confidentiality and privacy issues in relation to the control, transmission, and storage of personal health data;
(g) any impacts on the doctor-patient relationship;
(h) whether current regulation is appropriate.