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

Kasperbauer, T. J.; Halverson, Colin

doi:10.3389/fmed.2021.686264

Cited by 9 publications

(7 citation statements)

References 67 publications

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“…Challenges to online pediatric research include parent consent and pediatric assent [ 23 , 24 ], and in longitudinal studies, reconsenting and following children as they transition to adulthood. For instance, a pediatric biobank experienced challenges recruiting children, including re-consenting pediatric populations after they turned 18 [ 25 ].…”

Section: Recruitment Of Vulnerable Populationsmentioning

confidence: 99%

Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism

Daniels,

Law,

Green Snyder

et al. 2023

J. Clin. Trans. Sci.

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Background: SPARK launched in 2016 to build a US cohort of autistic individuals and their family members. Enrollment includes online consent to share data and optional consent to provide saliva for genomic analysis. SPARK's recruitment strategies include social media and support of a nation-wide network of clinical sites. This study evaluates SPARK's recruitment strategies to enroll a core study population. Methods: Individuals who joined between January 31, 2018, and May 29, 2019 were included in the analysis. Data include sociodemographic characteristics, clinical site referral, the website URL used to join, how the participant heard about SPARK, enrollment completion (online registration, study consents, and returning saliva sample), and completion of the baseline questionnaire. Logistic regressions were performed to evaluate the odds of core participant status (completing enrollment and baseline questionnaire) by recruitment strategy. Results: In total, 31,715 individuals joined during the study period, including 40% through a clinical site. Overall, 88% completed online registration, 46% returned saliva, and 38% were core participants. Those referred by a clinical site were almost twice as likely to be core participants. Those who directly visited the SPARK website or performed a Google search were more likely to be core participants than those who joined through social media. Discussion: Being a core participant may be associated with the "personal" connection and support provided by a clinical site and/or site staff, as well as greater motivation to seek research opportunities. Findings from this study underscore the value of adopting a multimodal recruitment approach that combines social media and a physical presence.

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Section: Recruitment Of Vulnerable Populationsmentioning

confidence: 99%

Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism

Daniels,

Law,

Green Snyder

et al. 2023

J. Clin. Trans. Sci.

View full text Add to dashboard Cite

show abstract

“…Despite nascent research into the effectiveness of such video consent tools, early indications suggest promise for improved comprehension and increased consenting rates. With two separate biobanks, the University of Michigan made strides, showing that video- and app-based consent improves comprehension compared to text alone ( 10 ) and pioneering the use of gamified augmented reality for informed consent, with materials presented as a series of stories ( 11 ). These newer visual methods bridge language and cultural gaps, simplifying comprehension of complex concepts.…”

Section: Valuing Community Inputmentioning

confidence: 99%

Community Review Boards offer a path to research equity

Sabet,

S. Bajaj,

Stanford

2024

Proc. Natl. Acad. Sci. U.S.A.

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“…There appears to be support for consent on attaining majority, as this recognizes their autonomy and respects their assent. Knowing adolescents' preferences can help to implement biobank policy in this matter ( 100 ). Re-contact is viewed as a way of respecting the autonomy of the young adult, but also as a “positive interaction” ( 101 ) and a means of building trust in the relationship with researchers.…”

Section: Specific Legal Issuesmentioning

confidence: 99%

Paediatric biobanking for health: The ethical, legal, and societal landscape

Casati

Ellul²,

Mayrhofer³

et al. 2022

Front. Public Health

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Biobanks play a central role in pediatric translational research, which deals primarily with genetic data from sample-based research. However, participation of children in biobanking has received only limited attention in the literature, even though research in general and in clinical trials in particular have a long history in involving minors. So, we resolved to explore specific challenging ethical, legal, and societal issues (ELSI) in the current pediatric biobanking landscape to propose a way forward for biobanking with children as partners in research. Methodologically, we first established the accessibility and utilization of pediatric biobanks, mainly in Europe. This was supported by a literature review related to children's participation, taking into account not only academic papers but also relevant guidelines and best-practices. Our findings are discussed under five themes: general vulnerability; ethical issues—balancing risks and benefits, right to an open future, return of results including secondary findings; legal issues—capacity and legal majority; societal issues—public awareness and empowerment; and responsible research with children. Ultimately, we observed an on-going shift from the parents'/guardians' consent being a sine-qua-non condition to the positive minor's agreement: confirming that the minor is the participant, not the parent(s)/guardian(s). This ethical rethinking is paving the way toward age-appropriate, dynamic and participatory models of involving minors in decision-making. However, we identified a requirement for dynamic tools to assess maturity, a lack of co-produced engagement tools and paucity of shared best practices. We highlight the need to provide empowerment and capability settings to support researchers and biobankers, and back this with practical examples. In conclusion, equipping children and adults with appropriate tools, and ensuring children's participation is at the forefront of responsible pediatric biobanking, is an ethical obligation, and a cornerstone for research integrity.

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

Cited by 9 publications

References 67 publications

Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism

Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism

Community Review Boards offer a path to research equity

Paediatric biobanking for health: The ethical, legal, and societal landscape

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