Childhood cancer poses an interesting question regarding consent validity. Biospecimen collection from childhood cancer patients takes place at a time when parents have the authority to give permission, because the child is a minor. Therefore, researchers have raised the following question: once these children reach adulthood and are legally able to provide consent (age 18 in Australia), should re-consent be sought?
There is presently no legal imperative in the Human Tissues Act, which governs biobank collection in New South Wales in Australia, to necessitate re-consent at 18 years. However, internationally, research has found that public opinion is in favor of re-consent for childhood cancer survivors. Rush et al. interviewed 30 childhood cancer survivors to gauge public opinion on re-consent in Australia.1 The patients were all part of the Long-Term Follow-Up Clinic at the Children’s Hospital at Westmead and ranged in age from 18 to 34 years old. They were between the ages of 1 and 15 when their cancers were diagnosed.
Participants answered the following questions:
- Do you think that permission should be sought for tumor banking again? Why or why not?
- Were you aware of your consented stored tissue?
- How do you now feel about this happening?
- To what degree do you or your parents/family/partner make decisions regarding your health in your household?
In their responses, participants who felt that re-consent was not necessary (60%) demonstrated trust in their parents’ decisions and recognized the importance of biospecimens for research. Participants in favor of re-consent indicated that they felt a sense of ownership over the tissue and a desire to remain informed. Interestingly, 70% of participants were not aware that they had donated tissue for use in research. Nonetheless, all participants re-consented to having their biospecimens used in future unspecified research.
The authors suggest that this study, while small, indicates that there needs to be a higher level of engagement between participants, parents and biobanks. They note that greater education will strengthen support, and therefore they recommend increased dialogue with the general public on the importance of biobanking in medical research. Further to this, they emphasize the need for tissue collection for biobanking to be embedded within clinical management.
Rush, A., et al. (2015) “Opinions of young adults on re-consenting for biobanking,” The Journal of Pediatrics, 167(4), doi: 10.1016/j.jpeds.2015.07.005.