Across the academy and beyond, scientists and other scholars struggle to translate their expertise so that it can be accessed and understood by the broad range of those who will be deeply affected. There are pragmatic reasons to make this effort; fame and funding. However, there is an ethical obligation driving this struggle as well. Science ought to serve the public interest. Clear and broad public engagement around the work and innovations of science is a helpful, if not necessary, step in achieving this mission.
Stem cell science is fast moving and complex, and it provides an ideal case study for considering this form of translation. I am using stem cell science to represent the endeavor broadly, to include not just work in the laboratory, but also the parallel work on the ethics and policy challenges.
Stem cell science is of vital importance to a spectrum of stakeholders. These range from patients to pundits, from those opposed to the destruction of embryos to those seeking a fountain of youth. Some of these passionate commitments can be tied to the context in which the science has grown. There are deep and abiding disagreements over ethical challenges, and a complex patchwork of policy responses has evolved both within and among countries around the world.
In the heated debates that led to the formation of policies (where they exist) the significant promise of stem cell science was liberally used as a lever by advocates, possibly leaving the public with unrealistic expectations about the timing and nature of the dividends from investments in stem cell science.
To compound the problem, potentially unrealistic expectations involve treatments for a wide range of conditions including many chronic and deadly diseases for which the current treatments are either inadequate or nonexistent. We now find ourselves with desperate patients watching their hope evaporate as time runs out while waiting for promised life-altering treatments.
These same desperate patients are being offered stem cell-based interventions for purchase ahead of widely-accepted evidence of safety and efficacy [Citation1–3]. These unproven interventions are being sold as clinical solutions for a staggering array of conditions. To some the providers of these interventions have all the hallmarks of snake oil-selling charlatans and to others they offer a last desperate path to access the promise of stem cell science and keep hope alive. Likewise, efforts to discourage patients from buying unproven interventions have alternatively been viewed as either laudable efforts to protect patients or unwelcome and disingenuous expressions of financially conflicted actors. Clearly, there is room for improvement. Tools to improve communication about stem cell science are needed.
Social media fuel revolutions and sell celebrity. They may be just the right sort of tool to improve communication. Social media share some characteristics with traditional media, such as the ability to broadcast content to a large audience, but they can be distinguished by the ways in which they exploit Web 2.0 architecture. With social media, all users can easily filter, share, recommend and, perhaps most importantly, create content, such as comments, status updates, blog posts and tweets. Social media move us from a ‘one-to-many’ to a ‘many-to-many’ model of mass communication.
Foremost among potential benefits, social media break down barriers [Citation4,Citation5]. With Twitter, for example, part of the magic is that tweets can be directed at just about any user – and those users might just respond. The ability to get even the momentary attention of a renowned expert (or celebrity, or celebrity-expert) is not only thrilling, but an opportunity that was formerly quite rare and out of reach for most.
For laypersons and experts alike, social media can foster rapid, unexpected connections with a diverse, international group, allowing users to break free from traditional silos. This can mean, for example, new freedom for discourse within disciplines among junior and senior faculty, or across discipline, fostering unique collaborations between experts both within and outside of the academy. Social media can also help level the playing field between scholars in resource-replete and resource-limited settings around the world.
Social media can provide a broadly accessible venue for thoughtful, civil engagement around even controversial topics. Social media also bring an immediacy that is unrivaled. Available social media platforms can be effective and efficient for collecting and refining ideas. Users can filter a vast river of content and locate the tiny stream that is germane to their interests. While social media users must invest, at least, their time, social media can be very cost effective. Start-up costs are low. In many cases, social media platforms are free and easy to use.
Lest we become overly enthusiastic about social media and its benefits, there are also substantial challenges that should be considered before jumping in with both feet.
Broken barriers can lead to messy incivility. Partisans can use the same freedom for unfettered civil discourse to lob inflammatory epithets directly at those with whom they disagree. Trolls abound. Similarly, social media seem equally effective at spreading good and bad ideas. Also, a level playing field can make it harder for some users to distinguish between credible sources and those that should strain credulity. Fringe sentiments can too easily be portrayed as reasonable alternatives or add to the distracting noise that can interfere with constructive engagement.
Social media require a shift in thinking about content and message control. Content, once posted, will be filtered, shared, recommended and commented on by other users. The content can and will take on a life of its own. Content-generating users will not be able to stop this process. They can, however, help shape the trajectory by remaining an active participant in conversations.
Social media also present a new spin on public and quasipublic spaces, leading to debates about implications for managing personal and professional identities online. Despite disclaimers like “tweets my own”, institutions are at risk of being held, at least partially, responsible for their employees’ online behavior. Concerned users and institutions will find a dearth of guidance, and guidance that does exist can be inconsistent [Citation5] and imprudent, if not impossible [Citation6], including, for example, recommendations to keep online personal and professional identities distinct.
Rather than a completely free and open space for democratic engagement, social media culture may have evolved with new barriers replacing the old. A ‘self-consciously self-marketing elite’ may be what this culture actually values over open participation [Citation7]. I think the truth lies between these extremes. Many barriers are broken, some remain. Similar to stem cell science itself, it will be unfortunate if the promise of social media is obscured in a fog of hype.
Many individuals interested in engaging via social media may be discouraged by a lack of institutional recognition for their efforts. Institutions should develop and encourage social media engagement by rewarding the activity with credit similar to that given, for example, for publications and presentations. Specifics will need to be sorted out (e.g., how much value to place). It is also important to acknowledge that we currently lack robust, well-defined metrics for demonstrating success. Proxies are readily available (e.g., traffic, followers and retweets), but more work is required to accurately map these onto our actual social media engagement goals.
Institutions should invest in personnel and infrastructure that can support outreach and engagement. Outreach professionals with social media expertise can develop readily accessible social networks and provide direct training and support to individuals interested in participation. In addition, they can help develop and implement institutional social media guidelines to navigate some of the more difficult challenges. Social media platforms evolve rapidly. Today’s Facebook may become tomorrow’s Friendster and Myspace. Engagement strategies and guidelines should be flexible enough to adapt to this dynamic playing field.
While these challenges are real, they are manageable if this is approached with appropriate expectations. None fully blocks access to the benefits of social media. Trolls can be ignored. Misinformation can best be addressed by those who have already made efforts to join online communities. We are not without experience in managing our behavior in different types of public spaces and how this might impact our professional lives. In some ways, the public spaces created online may be more similar to life in a small town where there are fewer prospects for providential anonymity to mask misbehavior.
Tweeting and other forms of social media-based outreach and engagement can be effective tools to help fulfil individual and institutional obligations to make stem cell science broadly and well understood. Not all stem cell scientists must tweet. Individuals and institutions should independently decide whether this particular tool is suitable for them. Those who are not horrified at the prospect of giving social media engagement a try should be encouraged to join the conversation and share their work. They may find it rewarding. They may help others. In fact, feel free to sign on and tweet @aregenberg [Citation8]. I am happy to offer encouragement and share what I have learned from my experiences.
Financial & competing interests disclosure
The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.
No writing assistance was utilized in the production of this manuscript.
References
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- Lau D , Ogbogu U , Taylor B , Stafinski T , Menon D , Caulfield T . Stem cell clinics online: the direct-to-consumer portrayal of stem cell medicine . Cell Stem Cell 3 ( 6 ), 591 – 594 ( 2008 ).
- Ogbogu U , Rachul C , Caulfield T . Reassessing direct-to-consumer portrayals of unproven stem cell therapies: is it getting better? Regen. Med. 8 ( 3 ), 361 – 369 ( 2013 ).
- Eysenbach G . Medicine 2.0: social networking, collaboration, participation, apomediation and openness . J. Med. Internet Res. 10 ( 3 ), e22 ( 2008 ).
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- Dutton WH . Running in social media circles . Science 342 ( 6161 ), 933 – 934 ( 2013 ).
- Twitter. Alan Regenberg. https://twitter.com/aregenberg