ABSTRACT
Aim: This study examines online enquiries received by two prominent stem cell science initiatives operating in different geographical jurisdictions. Materials & methods: Combined quantitative and qualitative analysis undertaken of internet-based queries (n = 1047) received by Stem Cells Australia and EuroStemCell from members of the public over a two-year period (May 2014-2016). Results: Findings reveal striking similarities between the two datasets and highlight the range of uncertainties, priorities and needs of those seeking information about stem cells online. Conclusion: Sustained and in-depth tailored guidance is needed to effectively meet the diverse stem cell-related information-based needs of communities internationally. Such efforts should be prioritized by regenerative medicine research initiatives and organizations, given the trust and hope diverse publics appear to place in these groups.
Subject(s)
Information Dissemination/methods , Information Seeking Behavior , Internet/standards , Stem Cell Research , Stem Cells , Therapies, Investigational/statistics & numerical data , Trust , Humans , Public HealthABSTRACT
EuroStemCell is a large and growing network of organizations and individuals focused on public engagement with stem cells and regenerative medicine - a fluid and contested domain, where scientific, political, ethical, legal and societal perspectives intersect. Rooted in the European stem cell research community, this project has developed collaborative and innovative approaches to information provision and direct and online engagement, that reflect and respond to the dynamic growth of the field itself. EuroStemCell started as the communication and outreach component of a research consortium and subsequently continued as a stand-alone engagement initiative. The involvement of established European stem cell scientists has grown year-on-year, facilitating their participation in public engagement by allowing them to make high-value contributions with broad reach. The project has now had sustained support by partners and funders for over twelve years, and thus provides a model for longevity in public engagement efforts. This paper considers the evolution of the EuroStemCell project in response to - and in dialogue with - its evolving environment. In it, we aim to reveal the mechanisms and approaches taken by EuroStemCell, such that others within the scientific community can explore these ideas and be further enabled in their own public engagement endeavours.
Subject(s)
Community-Institutional Relations , Patient Participation/methods , Scholarly Communication , Stem Cell Research/economics , Teaching , Advertising , Audiovisual Aids/statistics & numerical data , Europe , Humans , Marketing/methods , Social Networking , Stem Cell Research/ethicsABSTRACT
Commercial promotion of unsupported therapeutic uses of stem cells is a global problem that has proven resistant to regulatory efforts. Here, we suggest a coordinated approach at the national and international levels focused on engagement, harmonization, and enforcement to reduce the risks associated with direct-to-consumer marketing of unproven stem cell treatments.