Children, biobanks and the scope of parental consent

Hens, Kristien; Cassiman, Jean‐Jacques; Nys, Herman; Dierickx, Kris

doi:10.1038/ejhg.2011.29

Cited by 48 publications

(49 citation statements)

References 29 publications

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“…Parents believe that they have their child's best interest at heart, that they know their child best, and that they have the authority to decide whether their child should participate in research. [37] Whether their children would agree with their decisions is unknown. One study from Belgium found that adolescents generally were accepting of empowering parents on their behalf.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of African-American parents about biobank participation and return of results for themselves and their children

Halverson

Ross

2012

J Med Ethics

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Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results. Methods We used a mixed-method approach in order to study parents' attitudes toward the return of research results regarding themselves and their children. Participants attended four two-hour, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre- and post-engagement surveys. Results We recruited 45 African-American adults whose children received medical care at two health care facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enroll themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre- and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared. Discussion Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.

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Section: Discussionmentioning

confidence: 99%

Attitudes of African-American parents about biobank participation and return of results for themselves and their children

Halverson

Ross

2012

J Med Ethics

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“…5,11,30 The consent should provide the information in a manner that allows the details of the research to be easily understood. The high percentage agreement by laypeople compared with other groups may be explained by thinking that children between 12 and 18 years old can readily understand the information.…”

Section: Consent For Children's Participation In Biobanksmentioning

confidence: 99%

Ethics of children’s participation in a Saudi biobank: an exploratory survey

Alahmad

Hifnawy

Dierickx

2016

Genetics in Medicine

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Results:A clear and positive attitude toward pediatric clinical and genetic research inside and outside of Saudi Arabia was found. Parental consent is viewed as essential, with 60% saying parental consent is sufficient for children up to 12, and 40% saying it is sufficient for children 12-18 years old. More than 90% of respondents preferred to gain approval from any child with a decision-making capability; 58.2 and 38.6% of them believed that children between 12 and 18, and >18 years of age, respectively, can understand and thus give their approval for genetic research. Clear majorities in the study agreed with reconsenting children when they become adults, allowing them to withdraw at any time. A clear majority agreed that either parent could sign a consent form for their child to participate in a research biobank. Conclusion:All four groups believed, to varying degrees, that elements of ethical consideration were critical when involving children in research.Genet Med advance online publication 10 December 2015

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“…The second dimension has to do with the question of whether parents have the right to consent to future unspeciWed research on the stored tissue samples of their children (socalled broad consent) under certain conditions (i.e. ethics review) or only to speciWc types of research (Hens et al 2011a).…”

Section: Consentmentioning

confidence: 99%

“…Therefore, children should be allowed to express their opinions on the type of research that is performed on their samples as they grow older. They suggest that parents can give consent for further unspeciWed research if such research aims to understand and treat diseases, but that if samples are used later on for research that is more sensitive, such as behavioral research or IQ-related research, participants should be recontacted for renewed consent (Hens et al 2011a). …”

Section: Consentmentioning

confidence: 99%

Children and biobanks: a review of the ethical and legal discussion

2011

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The use of tissue samples from children is vital to genetic research. Collections of such tissue, in so-called biobanks, can take the form of large-scale prospective cohort studies or disease-specific studies using tissue of children with that specific disease. Collections of samples gathered in a diagnostics context, such as blood spot cards, can also be used for genetic research. Research on stored tissue samples from children poses ethical questions that are different from those posed by the use of samples from adults. Also, the ethical questions raised by the participation of children in biobanks are not analogous to those raised by the participation of children in clinical trials. In this review we first give an overview of the international ethical guidelines and legal regulations concerning biobanking and minors. Next, we review the different themes that occur in the ethical literature on this subject. Specifically we focus on questions of risk and benefit, consent and assent and the return of individual results. We also discuss the concept of solidarity, which is a relatively new concept in the context of children and biomedical research. To conclude, we discuss the gaps and questions raised by the review.

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Children, biobanks and the scope of parental consent

Cited by 48 publications

References 29 publications

Attitudes of African-American parents about biobank participation and return of results for themselves and their children

Attitudes of African-American parents about biobank participation and return of results for themselves and their children

Ethics of children’s participation in a Saudi biobank: an exploratory survey

Children and biobanks: a review of the ethical and legal discussion

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