Marge Berer describes the UK government’s attempts to address concerns about female genital mutilation (FGM) and the need for a proper epidemiological study. But what the government is now mandating raises issues of privacy, confidentiality, and consent. Berer writes, in part:
Starting in 2014, the Department of Health (DH) mandated that the Health & Social Care Information Centre (HSCIC) collect monthly prevalence data from NHS health professionals working in acute hospital settings, of women who had previously been identified and were being treated for FGM related or non-FGM related conditions, as well as newly identified women. This continued to March 2015.
Then in April 2015, prevalence data collection was replaced by an FGM enhanced dataset. Clinicians in England, working in Acute Trusts, Mental Health Trusts and GP Practices now have to record demographic and other data (including patient identifiable data) when a patient with FGM is identified during a consultation for health care of any kind, including the type of FGM she has undergone. The data has to be entered every time the woman or girl seeks care, has treatment related to her FGM, or gives birth to a baby girl (because the baby may be at risk of being subjected to FGM), and every time FGM is identified (by a clinician or self-reported), not just the first time. The data must be sent quarterly to the HSCIC. But this is not the way to do an epidemiological prevalence study.
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Are not the rights of patients with FGM also being violated when they are identified and recorded as having had FGM? Some activists who have undergone FGM have expressed feelings of being stigmatised and fear of speaking out about it. But unlike with HIV, this fear is because their families are also implicated and might be exposed. Perhaps they do not want themselves and their families to be investigated by the justice system? Or they may be afraid of the racism and condemnation resulting from such exposure?
Secondly, the HSCIC regulations now require that a host of information be recorded, with or without the patient’s permission. The mandatory and required (i.e. if appropriate) non-pregnancy-related data that must be collected include: the woman’s full name, birth date, post code, NHS number, country of birth, country of origin, GP practice, care contact date, details of referring organisation, details of treatment site, existence and type of FGM, details of de-infibulation, pregnancy status indicator, FGM family history, number of daughters under 18, that the woman was advised on the health implications of FGM and on the illegalities of FGM, daughter/s born at this attendance, woman’s age at FGM and country. Optional information includes age and country of origin of the father of any of the woman’s daughters aged under 18.
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