A qualitative study of adolescents’ understanding of biobanks and their attitudes toward participation, re-contact, and data sharing-Reference-Cited by-同舟云学术

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A qualitative study of adolescents’ understanding of biobanks and their attitudes toward participation, re-contact, and data sharing

Published:2017-03-22 Issue:4 Volume:173 Page:930-937
ISSN:1552-4825
Container-title:American Journal of Medical Genetics Part A
language:en
Short-container-title:Am. J. Med. Genet.

Author:

Murad Andrea M.¹²,Myers Melanie F.¹²,Thompson Susan D.²³,Fisher Rachel¹²,Antommaria Armand H. Matheny²⁴

Affiliation:

1. Division of Human Genetics; Cincinnati Children's Hospital Medical Center; Cincinnati Ohio

2. University of Cincinnati College of Medicine; Cincinnati Ohio

3. Center for Autoimmune and Genomics Etiology; Cincinnati Children's Hospital Medical Center; Cincinnati Ohio

4. Ethics Center; Cincinnati Children's Hospital Medical Center; Cincinnati Ohio

Funder

National Society of Genetic Counselors

Ethics Center at Cincinnati Children's Hospital Medical Center

Publisher

Wiley

Subject

Genetics(clinical),Genetics

Reference28 articles.

1. Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials;Baker;Cancer,2013

2. Biobanking in pediatrics: The human nonsubjects approach;Brothers;Personalized Medicine,2011

3. Pediatric data sharing in genomic research: Attitudes and preferences of parents;Burstein;Pediatrics,2014

4. Challenging a well established consent norm? One time consent for biobank research;Caulfield;Journal of International Biotechnology Law,2007

5. Identifying public expectations of genetic biobanks;Critchley;Public Understanding of Science,2016

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1. Experiences of pediatric cancer patients (age 12–18 years) with extensive germline sequencing for cancer predisposition: a qualitative study;European Journal of Human Genetics;2024-02-27

2. Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository;AJOB Empirical Bioethics;2023-07-24

3. A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development;BMC Medical Research Methodology;2023-05-16

4. Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol;2023-04-27

5. Pediatric biorepository participation during the COVID-19 pandemic: predictors of enrollment and biospecimen donation;BMC Pediatrics;2022-03-12

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