Parental views on tissue banking in pediatric oncology patients

Abstract

Parents are very supportive of tissue research, including genetic research. A majority of parents would prefer restricting research to pediatric conditions, and to be informed of results, even if of uncertain significance. These findings may assist Institutional Review Boards in assessing parentally perceived risks of research, and researchers in providing consent elements that support parents and adolescents in making fully informed choices.

Evidence of broad-based family support for the use of archival childhood tumour samples in future research

“…These studies all recruited from a population of living adults which may represent a favourable population from a practical standpoint, and it is possible that recruitment from other patient groups, such as families of children or deceased patients, would be more challenging. Our study found that although it is possible to successfully contact families up to 17 years post cancer diagnosis, there remains a significant proportion of families who are unable to be contacted (40% in this study), similar to the findings of McMurter et al ,13 who were able to contact 70% of eligible participants in an equivalent Canadian population. While we hypothesised a difference in the rates of successful contact between families of living and deceased patients, our findings did not reach statistical significance (63% and 49%, respectively, p=0.10).…”

“…Of the 75 participants who returned a form, 70 (93%) chose to participate in both the current and future cancer research projects. This finding may be compared with that reported by McMurter et al 13 of 78%. However, where we have asked participants to consent to ‘future cancer research projects’, McMurter et al asked participants for their willingness to consent to ‘research on all types of cancer’, and this variation in wording may explain the difference in rates of consent.…”

“…Such studies have shown general support for research using clinical samples, with between 73% and 97% of patients agreeing to research (specifically on their illness) 9 11 14–18. Limited paediatric studies have shown similar results, finding between 88% and 94% of parents agreeing to the use of their child's clinical tissue in research 13 15 17. This support has also been observed in qualitative studies, such as that by Dixon-Woods et al who interviewed 79 parents of children with cancer, and in some instances the children themselves, about how they felt about research on stored samples.…”

“…In many of the previously discussed studies, the responses to different types of consent options were considered, finding that in general participants are more willing to allow their tissue to be used for research on their specific illness (73–97% agree), than in research on other medical conditions (55–94% agree) 9 11 14–16 18. While there are less data available in the paediatric setting, McMurter et al 13 found a similar decline in consent rates as the research project became more removed from the child's illness, with 94% of parents agreeing to research on their child's type of cancer, 78% to research on all types of cancer, 69% to research on any childhood disease and 65% to research on any disease. Given the discrepancy between participants' views on the use of their or their child's tissue, to respect participant autonomy multiple consent options should be given.…”

La recherche biomédicale à l’ère des tumorothèques

“…En effet, seulement 35 % des patients participant à une biobanque constituée pour des recherches génétiques savaient que d'autres personnes que leurs soignants pouvaient accéder à leurs données médicales [20] et moins de la moitié (42 %) des patients de notre enquête avaient réalisé que leur consentement incluait une autorisation d'accès au dossier médical, alors que celle-ci était explicitement mentionnée dans le document écrit [4]. D'autres études ont montré que le transfert à l'étranger des prélèvements n'était pas jugé problématique [27], mais il y avait une certaine réticence à faire confiance aux chercheurs non académiques [28] et accepter la « vente » d'un échantillon soulevait de grandes difficultés [24]. Notre étude confirme ces résultats de manière très nette [4].…”