The Parents for Justice group has said it will encourage its members to boycott the Madden inquiry into organ retention following the Government's agrement of new terms of reference.
The Government agreed new terms of reference this week for UCC law lecturer Dr Deirdre Madden to complete an inquiry it established five years ago into the organ retention controversy.
Dr Madden will draw on 3,500 documents prepared by the previous chair of the inquiry, Anne Dunne SC, and has been asked to complete her report by December 21st.
She will have five terms of reference: to look into policies and practices relating to the removal, retention and disposal of organs from children who underwent postmortem examination in the State since 1970; to look into allegations that pituitary glands were removed from children undergoing postmortem examination for sale to pharmaceutical companies within and outside the State; to examine professional practice in relation to the information given to children's parents in respect of the removal, retention and disposal of tissue and organs and the appropriateness of practices of obtaining consent; to review the manner in which hospitals responded to concerns raised by bereaved families relating to postmortem practices carried out on children; and to make recommendations for any legislative and/or policy change as deemed appropriate.
Spokeswoman for the Parents for Justice group Charlotte Yeats said they were very unhappy about the terms of reference, particularly because they only covered children up to 12 years old.
"That is very, very unfair. Lots of our members would have older children and adult family members. How can closure happen if they only deal with children up to 12 years of age?"
She said what they had hoped for and were promised in terms of the inquiry was not what was being delivered under the new terms of reference.
The group was also upset because it was not informed about the terms by the Government but got the information second-hand.
