A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing
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University of Cincinnati / OhioLINK
2015
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ndltd-OhioLink-oai-etd.ohiolink.edu-ucin14278124922021-08-03T06:29:33Z A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing Murad, Andrea M. Ethics Biobanking Adolescents Consent Re-contact Data Sharing Research Purpose:While the inclusion of children and adolescents in biobanks is considered in the literature, there is very little information about how adolescents themselves view participation in biobanks and the issues of consent, re-contact and data sharing.Methods:One investigator (AM) conducted semi-structured, in-person qualitative interviews with adolescents between the ages of 15 – 17 years old in November and December 2014. Adolescents were recruited through the Teen Health Clinic at Cincinnati Children’s Hospital Medical Center’s (CCHMC’s) Burnett Campus and through flyers posted throughout the Medical Center’s Burnett Campus and information posted on CCHMC’s public website and social media pages. Enrollment was continued until data saturation was reached. All interviews were audiotaped and transcribed. Two investigators (AM and RF) coded and analyzed the transcripts using ATLAS.ti software. All the investigators reviewed any discrepancies and resolved them by consensus.Results:Eighteen interviews were conducted before saturation was reached. Four participants (22%) reported having previously heard of a biobank and 9 (50%) misunderstood what a biobank is even after being provided education. Benefits of enrolling in a biobank identified by participants included contributing to scientific research and helping other’s (89%), learning about their own health (22%), and helping themselves (11%). When asked about risks, 7 participants (39%) were unable to identify any potential risks, 9 participants (50%) identified technical errors, and 7 participants (39%) mentioned loss of privacy. The majority of participants (13, 72%) indicated that they would agree to participate in a biobank if asked. Sixteen participants (89%) felt that individuals who were too young to participate in the decision to enroll in a biobank should be re-contacted at the age of majority, and 13 participants (72%) believed that individuals who assented to participate in the biobank should be re-contacted at the age of majority. Four (22%) participants were comfortable sharing data from individuals who were too young to participate in the decision to enroll in a biobank and 10 (56%) felt comfortable sharing data of individuals who were able to assent (X2 = 4.00, p = 0.046).Conclusion:Few adolescents interviewed had heard of biobanks and many of them had misconceptions about biobanks that persisted even after attempts at educations. These results may indicate a need for better education prior to requesting assent. Adolescents tended to have positive attitudes toward scientific research and perceived few, if any, risks to participation. The majority was willing to participate. Adolescents’ emphasized the importance of individuals being aware of and participating in decisions about biobank participation. They consistently believed that individuals who were unable to assent should be contacted when they reached the age of majority and that their samples and data should not be shared prior to this time. Their opinions about contact and data sharing diverged more when discussing individuals who had previously given assent. These results suggest that research on deidentified data without participants’ knowledge or assent may undermine adolescents’ trust in the research enterprise. 2015-06-30 English text University of Cincinnati / OhioLINK http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427812492 http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427812492 unrestricted This thesis or dissertation is protected by copyright: all rights reserved. It may not be copied or redistributed beyond the terms of applicable copyright laws. |
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NDLTD |
| language |
English |
| sources |
NDLTD |
| topic |
Ethics Biobanking Adolescents Consent Re-contact Data Sharing Research |
| spellingShingle |
Ethics Biobanking Adolescents Consent Re-contact Data Sharing Research Murad, Andrea M. A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| author |
Murad, Andrea M. |
| author_facet |
Murad, Andrea M. |
| author_sort |
Murad, Andrea M. |
| title |
A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| title_short |
A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| title_full |
A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| title_fullStr |
A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| title_full_unstemmed |
A Qualitative Study of Adolescents’ Understanding of Biobanks and Their Attitudes Towards Participation, Re-contact and Data Sharing |
| title_sort |
qualitative study of adolescents’ understanding of biobanks and their attitudes towards participation, re-contact and data sharing |
| publisher |
University of Cincinnati / OhioLINK |
| publishDate |
2015 |
| url |
http://rave.ohiolink.edu/etdc/view?acc_num=ucin1427812492 |
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AT muradandream aqualitativestudyofadolescentsunderstandingofbiobanksandtheirattitudestowardsparticipationrecontactanddatasharing AT muradandream qualitativestudyofadolescentsunderstandingofbiobanksandtheirattitudestowardsparticipationrecontactanddatasharing |
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