When Children Become Adults: Should Biobanks Re-Contact?

Giesbertz, Noor A. A.; Bredenoord, Annelien L.; Delden, Johannes J. M. van

doi:10.1371/journal.pmed.1001959

Cited by 15 publications

(21 citation statements)

References 27 publications

(34 reference statements)

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“…This is especially important for biobanks, since they generally conduct longitudinal research and often want to collect phenotypic information on a regular basis. Earlier we argued in favor of re-contacting former child participants when they become adults, in order to give them the opportunity to withdraw their samples [ 63 ]. When participants can identify themselves with the biobank goals, they are probably less likely to withdraw their samples.…”

Section: Discussionmentioning

confidence: 99%

Personalized assent for pediatric biobanks

et al. 2016

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Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent into pediatric biobanking practice and consider both the content and process of personalized assent. In the discussion we argue that the assent procedure itself is formative. Investing in the procedure should be a requirement for pediatric biobank research. Although personalized assent will require certain efforts, the pediatric (biobank) community must be aware of its importance. The investment and trust earned can result in ongoing engagement, important longitudinal information, and stability in/for the research infrastructure, as well as increased knowledge among its participants about research activity. Implementing personalized assent will both respect the child and support biobank research.

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Section: Discussionmentioning

confidence: 99%

Personalized assent for pediatric biobanks

et al. 2016

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“…Analyses of the ethics of assent and reconsent have focused on adolescents' developing capacity to make decisions for themselves, especially regarding their bodies and personal information (16,(28)(29)(30)(31). Providing opportunities to make independent decisions in the context of medical research can perhaps help facilitate the development of these capacities.…”

Section: Developing Capacity To Make Consent Decisionsmentioning

confidence: 99%

Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues

Kasperbauer

Halverson

2021

Front. Med.

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Research biobanks that enroll minors face important practical, ethical, and regulatory challenges in reconsenting participants when they reach the age of 18. Federal regulations governing research in the United States provide minimal guidance and allow for a range of practices, including waiving the requirement to obtain reconsent. Some commentators have argued that institutional review boards should indeed grant such waivers, given the low risks of biobank-based research and the impracticality of contacting all participants when they turn 18. There is also significant ethical debate about the age at which adolescents can make authentic, autonomous decisions regarding their research participation. This paper reviews these issues in detail, describes the current state of the ethical discussion, and outlines evidence-based policies for enrolling minors into research biobanks.

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“…New tools are being developed to easily and inexpensively allow donors and participants to remain in constant contact with researchers and biobanks [ 74 ]. These tools can be used to allow participants whose health information and biological materials were collected by biobanks before the age of majority to reconsent or withdraw consent as adults, a practice which some suggest is an ethical necessity [ 75 ]. Indeed, the use of electronic consent systems is “a feasible and potentially game-changing strategy” for large research studies that depend on patient recruitment [ 76 ].…”

Section: Introductionmentioning

confidence: 99%

Genes, cells, and biobanks: Yes, there’s still a consent problem

2017

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From a research perspective, the interest in biobanking continues to intensify. Governments and industry have invested heavily in biobanks, as exemplified by initiatives like the United Kingdom Biobank and United States' Precision Medicine Initiative. But despite this enthusiasm, many profound legal and ethical challenges remain unresolved. Indeed, there continues to be disagreements about how best to obtain consent and the degree and nature of control that research participants retain over donated samples and health information. Emerging social trends—including concerns about commercialization and perceived rights of continuing control (“biorights”)—seem likely to intensify these issues.

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When Children Become Adults: Should Biobanks Re-Contact?

Abstract: Noor Giesbertz and colleagues consider different re-contact policy designs that could be used by biobanks to obtain permission for the continued use of samples collected from children.

Cited by 15 publications

References 27 publications

Personalized assent for pediatric biobanks

Personalized assent for pediatric biobanks

Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues

Genes, cells, and biobanks: Yes, there’s still a consent problem

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