Report suggests that it should be possible to develop a voluntary administrative scheme to collect biological samples from survivors and relatives.
Statement by the Minister for Children and Youth Affairs, Dr Katherine Zappone TD.
The Minister for Children and Youth Affairs, Dr Katherine Zappone TD, has today published Dr Geoffrey Shannon’s Report on the Collection of Tuam Survivors' DNA.
Minister Zappone had asked Dr Shannon to consider what actions may be possible under existing laws in response to a request from some representative groups to begin collecting DNA samples immediately in light of the age profile and health status of survivors. The purpose of collecting samples would be to later compare them against any DNA profiles which may be generated from the juvenile human remains found at the Tuam site and, if possible, to make positive identifications.
Dr Shannon’s report is 97 pages in length and considers what may be possible within the current legislative framework, with particular reference to:
- the collection of biological samples for comparison purposes
- the extent to which any relevant family rights under Article 8 of the European Convention on Human Rights might apply
- how best to ensure that the rights of those who wish to give biological samples could be safeguarded in respect of sensitive personal data and informed consent
Dr Shannon considers that it should be possible to develop a voluntary administrative scheme to collect biological samples from relatives before the enactment of the legislation that the Department of Children and Youth Affairs is developing in response to the discovery of juvenile remains at Tuam. The administrative scheme should then be subsumed into the legislation once that is ready. No DNA profiles will be generated from the biological samples until the legislation is in place and it has proven possible to generate DNA profiles from the juvenile remains.
Dr Shannon stresses that any scheme that is developed would have to be operated on the basis of informed consent in order to satisfy GDPR and constitutional requirements around data protection. Participants should be able to decide to withdraw at any time and request that their sample and the information held about them be destroyed.
Legal consultations to take place to consider appropriate scheme
Responding to the report, Minister Zappone said:
“I am very sympathetic to the concerns of survivors and family members that their age and health profiles introduce an element of urgency when it comes to the collection of biological samples. Following Dr Shannon’s report, I intend to request my officials to develop an appropriate voluntary administrative scheme to collect those samples, subject to legal advice.
"I would like to sincerely thank Dr Shannon for his judicious and comprehensive assessment of the complex questions at hand. As he pointed out, it is not yet clear whether or not it will be possible to generate DNA profiles from the juvenile human remains that are of such a quality that will result in them being capable of yielding familial matches. But I do not believe that this should be a barrier to hope and I am keen to give every possible opportunity to survivors and family members to try and identify the remains of those who they hold dear in their hearts.
"My officials will now consult further with our legal advisors and relevant agencies towards developing an appropriate voluntary administrative scheme in the coming months.”
Notes to the Editor:
Main findings of Dr Shannon’s report:
- any proposed administrative scheme which involves the collection, retention and (potential) use of genetic material must be designed to satisfy the requirements of the Irish Constitution and the European Convention on Human Rights (ECHR). These are that the measures be rationally justifiable and proportionate in light of the objectives pursued
- while in the longer term it is preferable that the process of collecting and matching DNA samples at the Tuam Mother and Baby Home should be underpinned by a robust statutory mechanism or framework, the creation of an interim administrative scheme under which family members could voluntarily submit biological samples for later testing appears to be constitutionally permissible and compliant with the ECHR. It should also serve as an appropriate means of vindicating the Article 8 rights of family members who may wish to provide samples at this point in light of their age profile and health status
- the Criminal Justice (Forensic Evidence and DNA Database System) Act 2014 does not provide a suitable legislative basis under which to collect the biological samples of family members
- it is vital to stress the voluntary nature of the proposed scheme. It will be necessary to demonstrate that the participants received full information prior to participation and that they consented to participate of their own free volition. GDPR and constitutional requirements should be carefully considered in the design of the scheme to ensure that the consent given by those participating is full, free and informed
- an aspect of the consent sought and obtained from a participant in the proposed scheme should stipulate that data will be retained until a matching process occurs, or until consent is withdrawn, whichever occurs first. Participants must be informed of their right to withdraw consent
- a feature of the proposed scheme will be that participants will have the option to nominate an individual to whom information gleaned from the DNA matching process can be provided in the event that the participant dies before a match is successfully made. Nominees would also need to provide consent for their details to be stored for this purpose and would also have the option to withdraw their consent
- in line with GDPR requirements, a Data Protection Officer must be designated for the proposed scheme
- it is of vital importance that in tandem with an administrative scheme being established, the State should be actively working towards enacting legislation that will create a statutory mechanism for the collection, storage and processing of close relatives’ biological samples, for the purposes of carrying out a matching process with the exhumed remains from Tuam. It is envisaged that any temporary administrative scheme that is established should eventually be subsumed into that legislation; this must also form an element of the consent obtained from participants and nominees
- it is imperative that the State clearly communicates to relatives, as well as to the media and general public, what individual(s), departments and or agencies will have responsibility for collecting and processing biological samples, and who will have ultimate responsibility for administering and overseeing the Scheme