Abstract:
BACKGROUND:Michigan's BioTrust for Health, a public health research biobank comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges in biobank research. METHODS:Working with Private Access Inc., a pioneer in patient-centric web solutions, we created and pilot tested a dynamic informed consent simulation, paired with an educational website, focusing on consent for research utilizing DBSs in Michigan's BioTrust for Health. RESULTS:Out of 187 pilot testers recruited in 2 groups, 137 completed the consent simulation and exit survey. Over 50% indicated their willingness to set up an account if the simulation went live and to recommend it to others. Participants raised concerns about the process of identity verification and appeared to have little experience with sharing health information online. CONCLUSIONS:Applying online, dynamic approaches to address the consent challenges raised by biobanks with legacy sample collections should be explored, given the positive reaction to our pilot test and the strong preference for active consent. Balancing security and privacy with accessibility and ease of use will continue to be a challenge.
journal_name
Public Health Genomicsjournal_title
Public health genomicsauthors
Thiel DB,Platt J,Platt T,King SB,Fisher N,Shelton R,Kardia SLdoi
10.1159/000366128subject
Has Abstractpub_date
2015-01-01 00:00:00pages
26-39issue
1eissn
1662-4246issn
1662-8063pii
000366128journal_volume
18pub_type
杂志文章abstract::While personalised cancer medicine holds great promise, targeting therapies to the biological characteristics of patients is limited by the number of validated biomarkers currently available. The implementation of biomarkers has undergone many challenges with few biomarkers reaching cancer patients in the clinic. Ther...
journal_title:Public health genomics
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pub_type: 杂志文章,随机对照试验
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更新日期:2010-01-01 00:00:00
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pub_type: 杂志文章,多中心研究
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