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. 2001 Jul 14;323(7304):108.

Rights involve responsibilities for patients

Doctors must not generally pass personal information about patients to others without consent

Cyril Chantler 1
PMCID: PMC1120719  PMID: 11480411

Editor—Doll and Peto suggest that the right to medical care should generally continue to include the responsibility to allow the information gained during its course to be used for the benefit of others who develop a similar disease or are at risk of developing it.1

This is based on the false premise that such a responsibility exists and disregards the requirements of the law. Doctors, just like other citizens, are subject to legislation and the common law, which require consent to the disclosure of identifiable health information. It is clear not only from case law but from the Data Protection Act 1998 and the Human Rights Act 1998 that as a society we accord considerable rights to the individual, including the right to privacy and autonomy.

The health departments of the United Kingdom are currently introducing measures to ensure that doctors can work within the law without jeopardising research. In England and Wales the Health and Social Care Bill will provide transitional arrangements for disclosure of information, at the direction of the secretary of state, that would otherwise be unlawful. It is not for the General Medical Council, or individual doctors, to decide on what terms patients receive care in the NHS, or when the requirements of the courts and parliament can be disregarded.

The General Medical Council fully recognises the importance of research and public health monitoring and encourages doctors to provide relevant information to registries, to bodies monitoring the safety of medicines, and for other public health purposes. Nevertheless, we do not believe that it is acceptable, either legally or morally, for doctors to pass personal information about patients on to others without the patients' knowledge or consent, except where there is an over-riding public interest or the law requires it.

Patients have a right to know when others want to be informed of, and store, intimate details about their private lives. In many cases they have a right to give or withhold consent to these disclosures.

References

BMJ. 2001 Jul 14;323(7304):108.

Research ethics committees will approve any protocol unless there are good reasons not to

Terence W Wiseman 1

Editor—Doll and Peto complain that the need for a patient's consent hinders research, particularly epidemiological studies.1-1 Regrettably, the increasing attention paid to patients' rights has been brought about by the cavalier attitude of many researchers towards the use of patient-identifiable data over the past three decades. Data have not been anonymised when they could easily have been and have been used for purposes that were not in the original research protocol. For these and other reasons, research ethics committees and the principles of informed consent for the use of patient-identifiable data have had to be introduced.

If a researcher can make a good case for collecting data without consent then a research ethics committee will give it due consideration. But the research community will have to convince many people on the committee that it will handle the data only in accordance with the original submitted protocol and that disciplinary action will be taken against those breaching the rules; only then will the proposal be accepted.

It is as unethical to hinder legitimate research as it is to permit the use of data for which consent has not been given. Those of us responsible for protecting patients' interests are well aware of this. Research ethics committees are not bound by advice issued by the General Medical Council or any body other than the Department of Health; they will approve any protocol unless there are good reasons for them not to (despite the perceptions of most researchers).

References

Articles from BMJ : British Medical Journal are provided here courtesy of BMJ Publishing Group

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