Engaging a state: Facebook comments on a large population biobank

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.

Public engagement with genomics

“…Perhaps for this reason, somatic therapies are seen as more acceptable than germline therapies 8 , 47 . Costs are also a cause for concern 34 , 35 , particularly if high costs lead to inequalities in access to genetic modification therapies 48 . This is a concern particularly in the US context due to a lack of universal health coverage 35 .…”

“…People in England are generally willing to have genetic data shared in a healthcare context and for this to be used for research activities 44 , but not to the same extent as for the application of genetic and genomic technologies to deliver clinical care 17 . Negative attitudes towards genomics generally stem from concerns around data use, confidentiality, and privacy 17 , 34 – 36 , 44 , 48 , 49 , 51 , and incidents in which the NHS failed to securely store data may play into fears around mishandling of data 44 . Indeed, members of the public with more personal experience of genetics in relation to health and disease in their family 17 , 35 , 38 – 40 , 49 have more positive attitudes toward genetics and genomics but also have more concerns about how genetic data are used.…”

“…Social media and virtual platforms . As social media increases in popularity, more studies are using online platforms and virtual means to engage the online public in conversations about genomics 48 , 70 , 71 . Some studies we identified used social media and other virtual platforms simply to invite debate and raise awareness of genomics 48 , 70 , 71 , while others collected data through social media or asked participants to interact with videos or films through a virtual platform 70 , 72 .…”

“…As social media increases in popularity, more studies are using online platforms and virtual means to engage the online public in conversations about genomics 48 , 70 , 71 . Some studies we identified used social media and other virtual platforms simply to invite debate and raise awareness of genomics 48 , 70 , 71 , while others collected data through social media or asked participants to interact with videos or films through a virtual platform 70 , 72 . Often, this form of engagement has been used to complement more traditional social sciences research (e.g., surveys, interviews), or traditional forms of engagement (e.g., a panel discussion involving a group of experts, and public audiences invited to attend and ask questions) 70 , 72 .…”

Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons

“…(1) protecting children and advancing the science of pediatric disease (Bertier et al 2017;Manhas et al 2016;McGuire, Oliver, et al 2011;Burstein et al 2014;Nature Biotechnology 2015;Hens, L evesque, et al 2011;Platt et al 2017;Fisher, McCarthy, and Harrington 2013;Hens, Wright, and Dierickx 2009;Dowty and Korff 2009;Manolio et al 2007); (2) respecting individual rights versus serving public interests (Ahrens et al 2006;Petrini et al 2012); and (3) preserving data privacy versus activating a right to data access (Golding 2009;Nooner et al 2012). The majority of records implied that balancing benefits with informational risks (17 reason mentions) is complicated, given the uncertainties of data privacy/and security at the time of data contribution (Dowty and Korff 2009;Bertier et al 2017;Manhas et al 2016 i.…”