In this series of Ampersand posts, PRIM&R touches base with those who presented programmatic and research-based findings at past PRIM&R conferences.

Spotlight on an abstract from the 2009 Advancing Ethical Research Conference.

Title: Parental Attitudes Toward Pediatric Biobanks

Authors: Jody Harland, MS, CIP; Lucy Miller, RN, BSN, CCRC; Eric Meslin, PhD; James Wolf, PhD; and Scott Denne, MD

Affiliation: Indiana University Department of Pediatrics; Indiana University Center for Bioethics; Survey Research Center, Indiana University Purdue University – Indianapolis; Indiana Clinical and Translational Science Institute (CTSI)

Abstract summary: It can be difficult for IRBs to discern what concerns potential subjects may have relative to their participation in biorepositories (or “biobanks”); and thus, what information should be conveyed to subjects. The establishment of pediatric biobanks can be more challenging due to the additional ethical and regulatory concerns about involving children in research. IRBs rarely have actual data available as to how such pediatric biobanks are viewed by families. This study sought to survey parents/guardians about their attitudes toward pediatric biobanking research.

Parents/guardians of pediatric inpatients and pediatric outpatients at a children’s hospital were offered in-person surveys. Broad support for pediatric biobanking was noted regarding the parents/guardians’ allowance of their child’s blood to be included in a hospital biobank (80.3% ‘agreed’ or ‘strongly agreed’). Areas of concern included general opposition to the commercialization of biobank samples (61.4% were ‘opposed’ or ‘strongly opposed’). Respondents indicated that they trusted the institution to maintain their confidentiality (90.9% ‘agreed’ or ‘strongly agreed’). IRBs can use this data to inform their reviews of pediatric biobanking protocols. We will share the results of this study with IRBs and plan to conduct focus groups with parents and children in an effort to obtain more detailed, qualitative information about attitudes toward pediatric biobanking.)

PRIM&R Staff (PS): In the months since you presented this abstract at PRIM&R’s 2009 AER Conference, how has your research changed or evolved?

Jody Harland, MS, CIP (JH): At Indiana University, we are engaged in the creation of a new biobank (which will include both pediatric and adult samples) and as a result, our research is evolving such that we anticipate using these findings to help shape the actual creation of this new biobank. We are exploring the possibility of conducting focus groups with those respondents who agreed to be re-contacted about future participation so that these results can inform the development of the new biobank. Finally, we would like to further explore how to ask these questions of older children in an effort to gain adolescents’ perspectives of the issues.

PS: What challenges have you faced in advancing your research?

JH: As with many research programs, a major challenge is the development of dedicated time and space to focus on this issue. However, we are committed to pursuing this line of research and to better understanding attitudes toward biobanking research.

For questions or comments about this program, please contact Jody Harland.

Interested in submitting an abstract to present at PRIM&R’s next animal or human research ethics conference? Please e-mail us for more information.