Rapid Responses to:

LETTERS: Ruth G Jepson and Roma Robertson Difficulties in giving fully informed consent BMJ 2003; 326: 1039a [Full text]

Rapid Responses: Submit a response to this article

Rapid Responses published:

over-riding others wishes is an abuse of ethical research

susanne stevens   (10 May 2003)

Example notice for patients about research

Julia Hippisley-Cox   (1 June 2003)

over-riding others wishes is an abuse of ethical research 10 May 2003
susanne stevens, retired cardiff cf24 3pf Send response to journal: Re: over-riding others wishes is an abuse of ethical research	Most research shows that people are altrusitic and willing to offer information freely - if treated honestly, with respect, rather than have their information taken without consent. Once systems are in place it should not be too costly to treat people as partners in the enterprise of research rather than simply data providers. Researches should view informing the public as part of their brief if wishing to carry out work using individuals' information. Users of the NHS have historically been treated as a mass which could too easily be exploited by those in advantageous positions.But after recent scandals involving research there is no room to backtrack on ethical principles.Even if people are fully informed of the process, as the authors suggest as a way forward, it should be born in mind that the outcome will not necesarily be predictable in the direction they would wish. Competing interests:   None declared
Example notice for patients about research 1 June 2003
Julia Hippisley-Cox, Senior Lecturer Nottingham University NG7 2RD Send response to journal: Re: Example notice for patients about research	In their Letter Jepson and Roberston mention that General Practices in New Zealand display notices to inform patients that their data may be used for research. We thought you may wish to consider publishing the text of the notice which we ask our research practices to display in case other practices (or indeed hospitals) find it useful. The notice has been approved by Trent Multi-Centre Ethics Committee and we believe it to be a step towards better information and consent procedures for patients. It is also possible for patients in general practices with the EMIS computer system to opt out of anonymised data collection procedures should they wish (see http://www.qresearch.org). EXAMPLE NOTICE FOR PATIENTS ‘SURGERY NAME’ IS A RESEARCH PRACTICE. We ask you for information about yourself so that you can receive proper care and treatment. We keep this information, together with the details of your care, because it may be needed if we see you again. We may use some of this information for other reasons, for example, to help us protect the health of the public generally, to plan for the future, to train staff and to carry our medical and other health research for the benefit of everyone. We are currently involved in some research studies that require anonymous information from patients’ notes. You can not be identified from this information. If anything to do with the research would involve you personally, you will be contacted to see if you are willing to take part, you will not be identified in any published results without your agreement. You have a right of access to your health records. If at any time you would like to know more, or have any concerns about how we use your information you can speak to: ‘Person nominated by practice’ tel: number EVERYONE WORKING FOR THE NHS HAS A LEGAL DUTY TO KEEP INFORMATION ABOUT YOU CONFIDENTIAL Competing interests:   I am an academic researcher who makes extensive use of routinely collected data for research