Informed consent for the study of retained tissues from postmortem examination following sudden infant death.

OBJECTIVE: To develop an approach for seeking informed consent to examine tissues retained from a previous study of sudden infant death syndrome (SIDS) as part of a study on asthma, and to document responses and participation rate. DESIGN: Pilot open-ended approach to 10 volunteer SIDS parents, followed by staged approach (newsletter, mail and telephone call) to seek consent from the target SIDS families for the asthma study. PARTICIPANTS: Parents (n = 10) of SIDS infants known to SIDS and Kids Victoria and parents of SIDS infants (n = 107) from the 1991-2 SIDS in Victoria case-control study. MAIN OUTCOMES: Qualitative responses of the piloted parents and study parents, and participation rates. RESULTS: The pilot group responses were used to refine the written material to be provided. Of the 72 families for which contact details were available, 45 gave verbal consent for contact by the Victorian Institute of Forensic Medicine regarding the asthma study, three refused and 24 did not respond to two letters. Thirty-three completed consent forms, all positive for participation in the asthma study, giving a positive response rate of 73% (33/45). CONCLUSIONS: The use of postmortem tissue for research is acceptable to the next of kin when an approach is sensitive to their concerns and needs and is made by experienced counsellors from a familiar organisation. Despite the painful memories evoked by the approach of the research group, the acceptance rate among those who could be contacted was high.