Is collecting FGM/C patient identifiable data ethical?

There are no accurate figures for women and girls who’ve undergone FGM/C in Britain or elsewhere.

The best available data for Britain are estimates from City University, London (2014).

They suggest that 103K women and girls aged15-49 with FGM are living in E&W, that 24K women are aged over 50 and that approximately 10K girls are at risk.

Since September 2014, estimates about women who’ve undergone FGM/C have been centralised to the Health and Social Care Information Centre (HSCIC) by NHS acute Trusts. The aim of the exercise was to get an indication of the national picture and to use it to commission services. Collecting was also to encourage a culture of reporting and for health professionals to take action in regard to FGM/C and to overcome barriers in regard to it.

All acute Trusts were obliged to record in clinical notes when women with FGM/C were identified and the type, if known. Of course the figures were not accurate but were considered reasonably so. The ethical nature of collecting this data was not an issue because it was anonymous.

Monthly results were published as an official statistic between Oct 14 -March 15. The media dutifully reported the estimated figures. But they, were frequently cited as facts.  But the DH FGM Unit and HSCIC considered this coverage a measure of the success of the initiative.

Since April 15, an FGM enhanced dataset replaced the old prevalence one. Collection and submission of the new data is required from all English acute trusts from 1 June 2015, and will be for all GPs and mental health trusts from 1 October 2015. Reporting changes from monthly to quarterly.

Clinicians have to record FGM/C patient identifiable data when identified. This includes demographic data (patient name, NHS Number, date of birth and post code) in order to verify that the information being recorded is for the right woman or girl.

Information that should be collected includes country of origin, pregnancy status indicator, daughters under 18, and that patients have been advised of the health implications and illegality of FGM/C. More will be collected, in time.

Concerns have been raised and continue about the ethical basis of centralising confidential, patient identifiable data to the HSCIC. But these concerns have been over-ridden by a ministerial directive. The HSCIC justified this, saying it’s necessary to avoid data duplication. And that because it cannot legally share the patient identifiable data with other departments, it remains secure and confidential.

While the patient has to be told that their personal data is being collected and why, and an information leaflet supplied, she does not have to give consent for this to happen.

Isn’t this unethical? What about patients’ right to privacy? If an exemption has been sought why has this not been publicised? Why is informed consent not being sought?

Women and girls wishing to object to their information being included are encouraged to visit this site