The group acknowledges the difficulty inherent in approaching a newly bereaved family/individual and broaching the topic of organ removal/retention/disposal. To this end, the group has been advocating that a designated Bereavement Officer would be appointed in all major hospitals where death is a sad but frequent occurrence. The role of such an official would be to act as an intermediary between health professionals and the family.

Ideally he/she would help to span the bridge that often exists between the medical and lay-person 's perspective of death. He/she would be instrumental in developing and implementing a policy of informed consent in the whole area of post-mortem practice. Parents for Justice formalised this recommendation in lengthy submissions to The Coroner 's Review Group and to the Eastern Regional Health Authority. The group welcomed the ERHA 's decision to appoint such a designated post-mortem co-ordinator.

2. Information:
The committee members have visited many hospitals throughout the country since the beginning of 2000.We have expressed the degree of pain that has been caused by post-mortem practices of the past. We have emphasised the absolute necessity for informed consent and information to underpin all features of autopsy practice.

In response to the concerns expressed by the group, most major hospitals have now introduced comprehensive information leaflets about post-mortems. Consent forms have been reviewed, updated or (in some cases)introduced in the majority of Irish hospitals. Parents for Justice has had significant input n the drafting of these information leaflets and consent forms. We have attempted to address the issues which caused deepest hurt to our members and to ensure that they never happen again.

3. Dignified Disposal:
In direct response to the sense of outrage most members experienced upon discovering the methods of organ disposal which were in place in Irish hospitals, most hospitals have by now purchased a designated plot within a cemetery. Organs are now interred n this plot, with the consent of next-of-kin when all clinical/research work has been completed. Alternatively, families also have the option of reclaiming these organs and arranging to have them buried in the family plot.

The above are some of the visible and tangible ways in which Parents for Justice have safeguarded the rights of parents and next-of-kin and contributed to their empowerment at a time when they are at their most vulnerable.

Parents for Justice would envisage that a Human Tissue Act would copper-fasten the rights of next-of-kin to explicit informed consent about post-mortem practice. We would also hope that such an Act would provide a statutory framework within which the practice of pathology would be regulated in a way that would safeguard and ensure pathologists / research workers, continued access to human organs/tissue for the continuation and advancement of their very valuable work.

It remains our belief that had consent for the retention of organs for research /education projects been sympathetically and truthfully sought, that parents and next-of-kin would have responded to such requests with generosity. A Human Tissue Act, we would hope, would enshrine the rights of next-of-kin while safeguarding and endorsing the work of pathologists, consultants and researchers.

Parents for Justice in conjunction with the Irish Kidney Association has continuously pointed to the need for education about the difference between organ retention and organ donation. The group has publicly supported the work of the Irish Kidney Association and has also written to the Transplant Co-ordinators in all of the major hospitals offering our support in whatever way possible to resolve this unsatisfactory situation.

We will continue to lobby the government of the day to ensure that sufficient funding is made available to implement the recommendations of this report and also those of the Coroner’s Review Report. The recommendations will not be allowed to remain simply worthy aspirations, they will become working realities in every hospital and health board area in this country. We are committed to fostering a collaborative relationship with hospitals and health professionals. It is only through dialogue and mutual respect, that we can all move forward.

The healthcare system faces many challenges in the years ahead. Parents for Justice looks forward to playing an integral part in the radical reform that is already under way.