Dataset Information

Views of adolescents and parents on pediatric research without the potential for clinical benefit.

ABSTRACT:

Objective

Critics argue that pediatric research without the potential for clinical benefit is unethical because it treats children as mere means, exposing those who cannot consent to risks for the benefit of others. The present survey was designed to assess whether this claim is consistent with the views of adolescents who actually participate in research, or their parents.

Methods

Interviews were conducted with adolescents participating in research at the NIH Clinical Center or Seattle Children's Hospital, and their parents, from June 2008 through April 2010.

Results

Interviews were completed with 177 of 186 adolescent/parent pairs (response rate= 95.2%). Overall, 90% of the adolescents and parents were willing to have the adolescent undergo a few extra blood draws, and 65% were willing to have the adolescent undergo an extra skin biopsy, for research purposes. The vast majority felt that the adolescents were making an important contribution to help others, and 80.8% of the adolescents felt proud to be doing so. Respondents overall were equally willing to have the adolescent face risks to help others in a research study or in a charitable activity.

Conclusions

The views and experiences of these respondents do not support the claim that pediatric research without the potential for clinical benefit treats subjects as mere means. Instead, the findings provide proof of principle for the claim that non-beneficial pediatric research involves a type of charitable activity which offers children the opportunity to contribute to a valuable project to help others.

SUBMITTER: Wendler D

PROVIDER: S-EPMC3457618 | biostudies-literature | 2012 Oct

REPOSITORIES: biostudies-literature

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Publications

Views of adolescents and parents on pediatric research without the potential for clinical benefit.

Wendler David D Abdoler Emily E Wiener Lori L Grady Christine C

Pediatrics 20120910 4

<h4>Objective</h4>Critics argue that pediatric research without the potential for clinical benefit is unethical because it treats children as mere means, exposing those who cannot consent to risks for the benefit of others. The present survey was designed to assess whether this claim is consistent with the views of adolescents who actually participate in research, or their parents.<h4>Methods</h4>Interviews were conducted with adolescents participating in research at the NIH Clinical Center or S ...[more]

PMID: 22966027

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Project description:Despite major improvements over the past several decades, many patients undergoing hematopoietic stem cell transplantations (HSCT) continue to suffer from significant treatment-related morbidity and mortality. Clinical research studies (trials) have been integral to advancing the standard of care in HSCT. However, 1 of the biggest challenges with clinical trials is the low participation rate. Although barriers to participation in cancer clinical trials have been previously explored, studies specific to HSCT are lacking. The current study was undertaken to examine the knowledge, attitudes, and perceptions of HSCT patients regarding clinical trials. As members of focus groups, participants responded to open-ended questions that assessed factors influencing decision-making about HSCT clinical trials. Suggestions for improvements in the recruitment process were also solicited among participants. Seventeen adult HSCT patients and 6 parents of pediatric HSCT patients participated in the study. The median age was 56 years (range, 18 to 70) and 44 years (range, 28 to 54) for adult patients and parents, respectively. Participants universally indicated that too much information was provided within the informed consents and they were intimidated by the medical and legal language. Despite the large amount of information provided to them at the time of study enrollment, the participants had limited knowledge retention and recall of study details. Nevertheless, participants reported overall positive experiences with clinical trial participation and many would readily choose to participate again. A common concern among participants was the uncertainty of study outcome and general lack of feedback about results at the end of the study. Participants suggested that investigators provide more condensed and easier to understand informed consents and follow-up of study findings. These findings could be used to help guide the development of improved consent documents and enhanced participation in research studies, thereby affecting the future design of HSCT research protocols.

Dataset Information

Views of adolescents and parents on pediatric research without the potential for clinical benefit.

Objective

Methods

Results

Conclusions

Publications

Views of adolescents and parents on pediatric research without the potential for clinical benefit.

Similar Datasets

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