bioethics and the media (by jeff ubois)

Media and BioethicsJeff 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

eventsCollaborative 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