C.K. and C.W.R. are members of the Board of Directors of the Northwest Sarcoma Foundation, a co-recipient of NCI R01 CA 133229-04S2.
Overcoming autopsy barriers in pediatric cancer research†
Version of Record online: 26 SEP 2012
Copyright © 2012 Wiley Periodicals, Inc.
Pediatric Blood & Cancer
Volume 60, Issue 2, pages 204–209, February 2013
How to Cite
Alabran, J. L., Hooper, J. E., Hill, M., Smith, S. E., Spady, K. K., Davis, L. E., Peterson, L. S., Malempati, S., Ryan, C. W., Acosta, R., Spunt, S. L. and Keller, C. (2013), Overcoming autopsy barriers in pediatric cancer research. Pediatr. Blood Cancer, 60: 204–209. doi: 10.1002/pbc.24320
- Issue online: 14 DEC 2012
- Version of Record online: 26 SEP 2012
- Manuscript Accepted: 16 AUG 2012
- Manuscript Received: 30 MAY 2012
- NCI. Grant Number: NCI R01 CA 133229-04S2
- end-of-life care;
More than 13,000 children annually in the United States and Canada under the age of 20 will be diagnosed with cancer at a mortality approaching 20% 1,2. Tumor samples obtained by autopsy provide an innovative way to study tumor progression, potentially aiding in the discovery of new treatments and increased survival rates. The purpose of this study was to identify barriers to autopsies and develop guidelines for requesting autopsies for research purposes.
Families of children treated for childhood cancer were referred by patient advocacy groups and surveyed about attitudes and experiences with research autopsies. From 60 interviews, barriers to autopsy and tumor banking were identified. An additional 14 interviews were conducted with medical and scientific experts.
Ninety-three percent of parents of deceased children did or would have consented to a research autopsy if presented with the option; however, only half of these families were given the opportunity to donate autopsy tissue for research. The most significant barriers were the physicians' reluctance to ask a grieving family and lack of awareness about research opportunities.
The value of donating tumor samples to research via an autopsy should be promoted to all groups managing pediatric cancer patients. Not only does autopsy tumor banking offer a potentially important medical and scientific impact, but the opportunity to contribute this Legacy Gift of autopsy tumor tissue also creates a positive outlet for the grieving family. Taking these findings into account, our multidisciplinary team has developed a curriculum addressing key barriers. Pediatr Blood Cancer 2013;60:204–209. © 2012 Wiley Periodicals, Inc.