29/01/2010

BMJ Issues Guidelines On Privacy

Guidance just published on the British Medical Journal's website, bmj.com sets out how personal information from clinical trials should be shared to help minimise risks to patient privacy.

Many peer reviewed journals now require authors to be prepared to share their raw, unprocessed data with other scientists or state the availability of raw data in published articles, but there has been little guidance on how such data should be prepared for sharing.

So Iain Hrynaszkiewicz and colleagues offer practical advice for anonymising (or de- identifying) data to ensure patient privacy when sharing clinical research.

They advise researchers to seek informed consent about data sharing from patients involved in clinical trials before studies begin.

They list 28 items of personal and clinical information that can make patients identifiable in anonymised datasets, and recommend that, unless patients have explicitly consented, all direct identifiers such as names should be removed from datasets.

And if three or more indirect identifiers such as age and sex are given about any patient, the researchers should ask an independent expert or an ethics committee to assess the risk of breaking confidentiality before sharing the data.

They also recommend that researchers should make explicit statements in research articles that have linked raw data, about patients' consent to the sharing of those data.

This, say the authors, should be the minimum standard for ensuring that participants' privacy is not put at unnecessary risk.

Trish Groves, BMJ Deputy Editor said the BMJ is now adopting some of these recommendations.

For example, the BMJ strongly supports the view that researchers should seek informed consent to data sharing from research participants up front, at the recruitment stage.

The journal will also expand its advice to authors about data sharing, and will extend its data sharing statements to include explicit information about consent.

(BMcC/BMcC)

Related UK National News Stories
Click here for the latest headlines.

30 October 2013
Numbers Taking Up NHS Stop Smoking Service Fall
New figures have shown an 11% drop in the number of people using the NHS in England to quit smoking. The Health and Social Care Information Centre data reveals the first fall in the use of the service for four years.
27 October 2015
15-Year-Old Arrested Over TalkTalk Data Theft
A 15-year-old boy has been arrested in connection with an alleged data theft from the TalkTalk website. The Metropolitan Police Cyber Crime Unit made the arrested on Monday at an address in County Antrim, Northern Ireland, assisted by the Police Service of Northern Ireland.
19 August 2014
New Data Shows Women Hit By 'Mid-Life Pay Crisis'
Female managers over 40 years old are earning 35% less than men, according to new data by the Chartered Management Institute (CMI) and XpertHR. To earn the same as a male manager over a career, a woman would have to work the equivalent of over 14 years more.
24 February 2010
Teen Pregnancy At 20-Year Low
Teenage pregnancies in the UK have fallen to their lowest rate in over 20 years, annual statistics published today show.