Bioethics and the Media (by Jeff Ubois)

Media and Bioethics
Jeff Ubois, The Bassetti Foundation

Agenda
Work of FGB
Why care about media & bioethics
Redefining media
Media engagement: you have new options
Open Access
Harbingers and things to come

Fondazione Bassetti
Responsibility in innovation
Survey of practices
Dialog on concepts

Responsibility in Innovation
Universal: every discipline, political domain, scale
Many related concepts - sustainability, transparency, accountability
Examples: gender selection; civil liberties; images of war

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

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

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

New Media, New Challenges
Consumption:
Identifying credible sources (diagnosis by Google?)
Production
Overcoming noise (Pacini’s problem)
Engagement
Conflict

Open Access
Knowledge unencumbered by IP
Close tie to responsibility in innovation
Policy, economics, practice

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

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

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

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

Engagement Timely Reference Published by you Updates Compilations Published by others Comments, corrections, current events Collaborative works

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

Examples
Software (Jeff Jonas)
Genetics (Ignacio Chapela)
Nanotechnology (Chris Peterson)
Design (Twidale)
Images of War

Bioethics and the Media (by Jeff Ubois)

by Fondazione Giannino Bassetti on Jul 24, 2009

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