Bioethics and the Media (by Jeff Ubois)

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For the International Intensive Course in Bioethics intitled Humanizing Tomorrow's Biomedicine

For the International Intensive Course in Bioethics intitled Humanizing Tomorrow's Biomedicine

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  • Innovation is a kind of power, and power should bring responsibility. But ... respsibilities are really hard to assess...too many actors, too many causes and effects.. Don’t have , can’t have a final answer, bit like a zen koan... turns out if you meditate on it, you keep getting new insights...
  • Generative question because Innovation and responsibility exist in every political and scientific domain, from the most theoretical to the most prosaic, and at every level of social structure—from the individual and the small group, to the multinational, nation state, or disciplinary field. ... RiI ties together the fields of bioethics and media ethics ... so media from RiI perspective.
  • Why does it matter here? Three pills -- wellness, autonomy, social justice ... all strongly affected by media system ... you can’t really pursue those goals without some plan for media engagement http://www.amazon.com/Great-Influenza-deadliest-pandemic-history/dp/0143036491/ref=sr_1_1?ie=UTF8&s=books&qid=1246513208&sr=8-1# reader
  • But it falls short... hard not to be frustrated...Personal: worked in DC as a journalist for ten years ... Hard to explain something complicated in 600 words, especially without assuming prior knowledge. ... result is over painful simplification. But that system is being redefined.
  • Media evolution is important because it brings new possibilities for pursuing ethical obligations ... How does it happen? Through incorporation. Through richness.
  • Text contains speech, film contains still images and audio, the internet contains all three This is accelerated by Moore’s Law, and the Internet evolves by incorporating old media. Has immediate political effects ... including in health policy. McLuhan Tetrad: four questions to ask about any media: * Enhancement/Extension: What does it enlarge or enhance or connect? Obsolescence: What does it erode or obsolete? Retrieval: What does it retrieve from the past? Reversal: What does it flip into when pushed to the limits of its potential?
  • Forgive the US centric view here... Whitehouse doing the healthcare debate -- on a blog! And just that: they want video, not text.... Well...how many dimensions to that?
  • There is a new set of problems with consumption and production. Engagement in patient communities) Out: Conflict: Huge antagonism between older and new systems. Critique by the old is there is no economic model and no quality control; critique by the new is that it’s too money driven.
  • A traditional approach to media is to buy access. Sometimes this looks bad...also what you’re for “truth” but facing an adversary with a larger budget: if you don’t agree Pharma say...well, can you match their resources? Economic powers will always express their interests via media, but now I want to talk about OA, which operates very differently.
  • Are people familiar with OA? Has anyone here read or published in an OA journal? Basic idea is that anyone can read, for free. For medical pubs, that’s a good thing, particularly in the developing world. Lots of projects in this area.
  • PLoS - can you read that?
  • Another is BioMed Central, recently acquired by Springer. Hear from Tom Murray tomorrow from the Hastings Center...which publishes leading bioethics journals and depends on subscription revenue. I’d say they are in a bind ...
  • OA advocates have found a lever... remember I mentioned antagonism between old and new media? The lever is that much of the material in commercial journals -- Elsevier, Sage, Springer -- is based on publicly funded research. This is an ugly fight...
  • really a fight for survival of big publishers, and people who think they are right...
  • And it’s becoming policy... btw it’s very hard, living in the States to get beyond a parochial sense of the world...so I’m sure there are other projects here that deserve a mention... Europeana. But the point of OA is that it’s a new system for engagement, so let me summarize some options...
  • Point here is there are many options for engagement, ethical questions around each one. Each one is open to you, and can help you fulfill the ethical obligations you choose to assume at this meeting. Want to close with a laundry list...
  • These are issues that didn’t fit in a half hour talk, but they are all coming, and it’s worth thinking about how to get out in front. QS: really different ... a kind of ultimate end of media, when the level of reporting gets down to the level of heart rate and blood chemistry...

Transcript

  • 1. Media and Bioethics
    • Jeff Ubois, The Bassetti Foundation
  • 2. Agenda
    • Work of FGB
    • Why care about media & bioethics
    • Redefining media
    • Media engagement: you have new options
    • Open Access
    • Harbingers and things to come
  • 3. Fondazione Bassetti
    • Responsibility in innovation
    • Survey of practices
    • Dialog on concepts
  • 4. Responsibility in Innovation
    • Universal: every discipline, political domain, scale
    • Many related concepts - sustainability, transparency, accountability
    • Examples: gender selection; civil liberties; images of war
  • 5. Why media matters
    • Media has a role in health
      • Cause and treatments for cholera published in 1854, ignored for 30 years
    • Influences public policy
    • Influences research
    • Influences personal practice
    Filippo Pacini
  • 6.  
  • 7. Redefining Media
    • As a carrier of information
    • Entire media system in transition now
      • Possibilities for communications are different
    • New media offer new ways to carry out long standing ethical obligations
    • Media evolve over time
  • 8. How Media Evolves
    • “ New media contain old media” - Marshall McLuhan
    • The Internet evolves by incorporating old media
      • ...postal mail, newspapers, radio, now telephone and television
    • Rich media, Web 2.0, contains all previous media -- text, image, audio, video
  • 9.  
  • 10. New Media, New Challenges
    • Consumption:
      • Identifying credible sources (diagnosis by Google?)
    • Production
      • Overcoming noise (Pacini’s problem)
      • Engagement
      • Conflict
  • 11.  
  • 12. Open Access
    • Knowledge unencumbered by IP
    • Close tie to responsibility in innovation
    • Policy, economics, practice
  • 13.  
  • 14. Open Access (business)
    • “ The traditional business model for scientific publishers relies on restricting access to published research, in order to recoup the costs of the publication process. This restriction of access to published research prevents full use being made of digital technologies, and is contrary to the interests of authors, funders and the scientific community as a whole.” - Biomed Central
  • 15. Open Access (funding)
    • Funders of global health research should require that all work supported by them will appear in public digital libraries, preferably at the time of publication and without constraints of copyright (through open access publishing), but no later than six months after publication in traditional subscription-based journals. - The U.S. Commitment to Global Health: Recommendations for the Public and Private Sectors Committee on the U.S. Commitment to Global Health
  • 16. Open Access (politics)
    • ... start having sit-ins in universities where they don’t adopt Open Access publishing rules. It’s ridiculous that scholars publish articles in journals that then charge 5, 10, 15 thousand dollars for people around the world to get access to it. I mean it’s no problem for Stanford or for Berkeley or for Harvard, but the developing world cannot get access to this stuff easily because of these extraordinarily idiotic 20th Century restrictions on access to knowledge -- Lawrence Lessig, Berkeley, October 11-12, 2008
  • 17. Open Access (policy)
    • 2008: Italy's Istituto Superiore di Sanità publishes OA mandate, requiring staff researchers to deposit their peer-reviewed manuscripts in the ISS repository immediately upon acceptance, for OA release 6-24 months after publication. (see https://mx2.arl.org/Lists/SPARC-OAForum/Message/4178.html )
    • 2007: The Scientific Council of the European Research Council (ERC) http://erc.europa.eu/pdf/ScC_Guidelines_Open_Access_revised_Dec07_FINAL.pdf
    • NIH Policy http:// publicaccess.nih.gov/FAQ.htm
    • Harvard OA Policy
  • 18. Engagement Timely Reference Published by you Updates Compilations Published by others Comments, corrections, current events Collaborative works
  • 19. Harbingers & Things to Come
    • Breakdowns: fake medical journals (Merck, Elsevier)
    • Moral panics: enhancement, esp cognitive; stem cells
    • Informing the press: The Hastings Center
    • Informing Hollywood: Stanford Center for Biomedical Ethics
    • Twitter, Google, and influenza
    • The quantified self: chronic conditions
  • 20. Examples
    • Software (Jeff Jonas)
    • Genetics (Ignacio Chapela)
    • Nanotechnology (Chris Peterson)
    • Design (Twidale)
    • Images of War