Literature DB >> 28382416

Engaging a state: Facebook comments on a large population biobank.

Tevah Platt1, Jodyn Platt2, Daniel Thiel3, Sharon L R Kardia4,5.   

Abstract

Scholarship on newborn screening, dried bloodspot retention, and large population biobanking call consistently for improved public engagement. Communication with participants likely occurs only in the context of collection, consent, or notification, if at all. We ran an 11-week advertising campaign to inform Michigan Facebook users unlikely to know that their or their children's dried bloodspots (DBSs) were stored in a state biobank. We investigated the pattern and content of comments posted during the campaign, focusing on users' questions, attitudes and concerns, and the role the moderator played in addressing them. We used Facebook data to quantitatively assess engagement and employed conventional content analysis to investigate themes, attitudes, and social dynamics among user and moderator comments. Five ad sets elicited comments during campaign weeks 4-8, reaching ∼800,000 Facebook users ($6000). Gravitating around broad, underlying ethical, legal, and social issues, 180 posts from 129 unique users related to newborn screening or biobanking. Thirty six conveyed negative attitudes and 33 conveyed positive attitudes; 53 posed questions. The most prevalent themes identified were consent, privacy, bloodspot use, identifiability, inclusion criteria, research benefits, (mis)trust, genetics, DBS destruction, awareness, and the role of government. The moderator's 81 posts were responsive-answering questions, correcting or clarifying information, or providing information about opting out. Facebook ad campaigns can improve engagement by pushing out relevant content and creating dynamic, responsive, visible forums for discussion. Reduced control over messaging may be worth the trade-off for creating accessible, transparent, people-centered engagement on public health issues that are sensitive and complex.

Entities:  

Keywords:  Attitudes; Biobanking; Bloodspots; Community engagement; Facebook advertising; Health communication; Newborn screening; Parent education; Social media

Year:  2017        PMID: 28382416      PMCID: PMC5496840          DOI: 10.1007/s12687-017-0302-z

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  45 in total

1.  Common criteria among States for storage and use of dried blood spot specimens after newborn screening.

Authors:  Carlo Petrini; Antonella Olivieri; Carlo Corbetta; Roberto Cerone; Giuliano D'Agnolo; Adriano Bompiani
Journal:  Ann Ist Super Sanita       Date:  2012       Impact factor: 1.663

2.  Ethical issues in secondary uses of human biological materials from mass disasters.

Authors:  Bartha Maria Knoppers; Madelaine Saginur; Howard Cash
Journal:  J Law Med Ethics       Date:  2006       Impact factor: 1.718

3.  Maternal attitudes and knowledge about newborn screening.

Authors:  Patricia Newcomb; Barbara True; Judith Walsh; Maynard Dyson; Suzanne Lockwood; Becky Douglas
Journal:  MCN Am J Matern Child Nurs       Date:  2013 Sep-Oct       Impact factor: 1.412

4.  The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research.

Authors:  Christine Critchley; Dianne Nicol; Margaret Otlowski
Journal:  Public Health Genomics       Date:  2015-03-13       Impact factor: 2.000

5.  Take another little piece of my heart: regulating the research use of human biospecimens.

Authors:  Gail H Javitt
Journal:  J Law Med Ethics       Date:  2013       Impact factor: 1.718

6.  Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

Authors:  Erin Rothwell; Rebecca Anderson; Aaron Goldenberg; Michelle H Lewis; Louisa Stark; Matthew Burbank; Bob Wong; Jeffrey R Botkin
Journal:  Soc Sci Med       Date:  2012-02-18       Impact factor: 4.634

7.  Public opinion about the importance of privacy in biobank research.

Authors:  David J Kaufman; Juli Murphy-Bollinger; Joan Scott; Kathy L Hudson
Journal:  Am J Hum Genet       Date:  2009-10-29       Impact factor: 11.025

8.  Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for Health.

Authors:  Daniel B Thiel; Tevah Platt; Jodyn Platt; Susan B King; Sharon L R Kardia
Journal:  J Community Genet       Date:  2013-07-27

9.  Social media use by community-based organizations conducting health promotion: a content analysis.

Authors:  Shoba Ramanadhan; Samuel R Mendez; Megan Rao; Kasisomayajula Viswanath
Journal:  BMC Public Health       Date:  2013-12-05       Impact factor: 3.295

Review 10.  The use of social networking sites for public health practice and research: a systematic review.

Authors:  Daniel Capurro; Kate Cole; Maria I Echavarría; Jonathan Joe; Tina Neogi; Anne M Turner
Journal:  J Med Internet Res       Date:  2014-03-14       Impact factor: 5.428

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