In the United Kingdom every citizen has the right to medical care. No longer limited to palliation, this care has become increasingly curative and even preventive as a result of the increase in knowledge that has accumulated from experience of the conditions that gave rise to its need.

Rights, however, do not exist in a void and their exercise involves responsibilities. In the 2400 years since Hippocrates, it has always been recognised that medicine advances by the sharing of experience and that patients generally have the responsibility to allow their experience to be used for the benefit of others who may subsequently have a similar condition, the confidentiality of their personal characteristics being protected by the professional code of their physicians. Exceptions can always be made in particular cases, but this has been the general rule.

Now, however, according to the advice of the General Medical Council this is no longer to be so; information, it is proposed, may be shared with medical research workers only with the patient’s expressed permission. As such permission may not have been sought, this proposal will put serious obstacles in the way of clinical research and will put even more serious obstacles in the way of epidemiological research, particularly if (as with the maintenance of cancer registries) this research requires representative data.

The right to medical care should, we suggest, generally continue to include the responsibility to allow the information gained in its course to be used for the benefit of others who develop a similar disease, or are at risk of developing it. Confidential sharing of information about patients between doctors and bona fide medical research workers (with exceptions only in particular cases) has done no harm and has achieved much good. Why destroy it?

This was written by Sir Richard Doll (one of our most illustrious members) and Sir Richard Peto  in 2001.

Doll R, Peto R. Rights involve responsibilities for patients. Br.Med.J. 322: 730, 2001

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2 Comments

  1. Clutter says:

    In principle I agree that my medical data should be shared to broaden knowledge with bona fide medical researchers, especially as I’ve benefited from the pool of knowledge.

    I do not agree that my data needs to be identifiable and believe it should be anonymised before leaving my GP practice and being uploaded.

    Neither do I agree that my NHS data should be made available to companies like Virgin, Serco et al, who will use the data to undermine and compete with the NHS with an eye to profit and not furtherance of medical research. I will never consent for my data to be sold or shared to insurance companies.

    When robust protocols are in place to prevent wholesale data being flogged to insurance actuaries, middle men uploading to Google, my data confidentiality and sharing only with bona fide medical researchers I will opt into Care.Data.

  2. duncanenright says:

    I’m happy enough, with safeguards such as clarity of purpose and maybe access in defined and controlled conditions, for pharmaceutical companies to use my data in aggregation to inform research and development of new drugs and treatments. I’d like this to trigger a requirement for publication of all subsequent results as demanded by the Alltrials campaign,

What do you think?

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