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Engaging a state: Facebook comments on a large population biobank

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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.

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Acknowledgements

This work was funded by the National Institute of Child Health and Human Development, Grant Number 5-R01-HD-067264-02, Linking Community Engagement Research to Public Health Biobank Practice. The authors are extremely grateful to Beth Miller for suggesting the tagline of the campaign, “Where were you spotted?”, and to both Ms. Miller and Rhonda DeLong for their feedback and suggestions on our communication strategy. We also thank Nicole Fisher and Nitesh Singh for helping to organize and run the photography sessions for this ad campaign.

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Authors and Affiliations

  1. Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, MI, USA

    Tevah Platt & Sharon L. R. Kardia

  2. Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI, USA

    Jodyn Platt

  3. Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor, MI, USA

    Daniel Thiel

  4. Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor, MI, USA

    Sharon L. R. Kardia

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  1. Tevah Platt
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  4. Sharon L. R. Kardia
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Correspondence to Tevah Platt.

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The authors, Tevah Platt, Jodyn Platt, Daniel Thiel, and Sharon L.R. Kardia, have no conflicts of interest to report. This work was funded by the National Institute of Child Health and Human Development, Grant Number 5-R01-HD-067264-02, Linking Community Engagement Research to Public Health Biobank Practice. Quotations from Facebook users have been paraphrased to prevent the users from being identifiable from an online search. The individuals depicted in the Facebook ads disseminated in this study signed photo release forms that included permission to use images for educational, academic, and research purposes.

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Platt, T., Platt, J., Thiel, D. et al. Engaging a state: Facebook comments on a large population biobank. J Community Genet 8, 183–197 (2017). https://doi.org/10.1007/s12687-017-0302-z

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