It is estimated that between 1944-1984 some 1,500 women in Ireland were subjected to symphysiotomy procedures without knowing and without consenting.
Symphysiotomy involves the severing of a woman’s pelvis during childbirth. It causes life-long disability, chronic pain and mental distress. The UN Human Rights Committee has ruled that this was a breach of these women’s rights to freedom from torture, inhuman and degrading treatment.
Following the Walsh inquiry, which was published in 2014, the government established the Symphysiotomy Payment Scheme, a mechanism deeply criticised by many. In the course of its work the Scheme has gathered medical records of the 700 women who applied for compensation. Now, as it completes its work, one of the tasks it faces is to deal with these records in a way which complies with data protection laws and respects the constitutional and human rights of those women.
The approach adopted by the Scheme was to post a note on its website, indicating that where women have not requested that their records be returned to them by Sunday 20 March, it intends to destroy those records. Last Friday, the Department of Health claimed that destruction of the records is required under the Data Protection Act 1988 and further, that it is not destroying the original records, only those supplied to the Scheme. Both of these claims are disputable.
Where the problem arises
Section 2 of the Data Protection Act 1988 requires that records be kept ‘no longer than is necessary’. Fulfilment of that obligation does not require destruction. There are numerous ways that obligation could be fulfilled, including automatically returning the records to the women or contacting the women individually and asking them what they wish to happen with their records. There are also options involving archiving anonymised records.
This is not a semantic argument. Requiring women to request their records be kept places a burden on them which may be difficult to fulfil for many practical and emotional reasons. Age, infirmity (much of which will relate to the procedure), exhaustion with the process, trauma and victimisation may all contribute to these women finding it difficult to make that request, despite what they may actually wish. It also assumes that all women are aware of the requirement to make the request, which may well not be true, especially given the way in which the proposed destruction of the records was announced.
Further, paragraph 40 of the terms of the Scheme states:
The Assessor shall, where reasonably possible, arrange for the return to the Applicant or her Solicitor of any documents submitted by her or her solicitor to the Assessor as the case may be.
Women, therefore, who submitted their own medical records did so in the belief that these documents would reasonably be returned. The significance should not be underestimated: women were handing over records of a most traumatising experience and placing trust in the Scheme to treat those records with respect.
The destruction of the records may pose problems for future investigations
The second argument made by the Department is that it is not original records which will be destroyed. This may also be an over-simplification of the situation. The HSE guidelines allow hospitals to destroy the original records after 8 years. Where women have managed to secure copies of records, which was not the case in all instances, it is plausible that these will now be destroyed by hospitals which had retained them.
Nor can it just be assumed that those who submitted records kept copies for themselves. As such, the copies submitted to the Scheme may be the only copy of the records. Given that this relates to 700 individuals’ records it is difficult to know the state of all original records and in that uncertainty, records should not be destroyed.
It is therefore possible, in light of these points, that records will be destroyed against the wishes of these women, under the guise of a legislative requirement when this is not what the legislation requires. This will pose immense barriers to any future investigation or examination of the practice of symphysiotomy in Ireland, potentially denying redress to women.
And while the primary concern must be for the vindication of the rights of these women, there is a further importance to these records. The extent, history and impact of institutional abuse in Ireland is one which we have struggled to accept, appreciate and understand. Ensuring the survival of these records is essential to that process.
Over the last two weeks, survivors, activists, lawyers, academics, historians, artists, as well as almost 3,000 people who have signed an online petition, have called on the government to intervene and prevent the destruction of the records. Destroying the records is not necessary, it would be a breach of the privacy rights of these women and would involve the country closing its eyes to the reality of this torturous practice. We must not let that happen.
Dr Vicky Conway is a lecturer in law at Dublin City University