Health, science, knowledge, access and elitism: Lawrence Lessig and science as remix culture

I have been an admirer and supporter of Lawrence Lessig's crusade for copyright reform and promotion of remix culture for many years. In a recent talk at CERN, Lessig applied his arguments for a fairer interpretation of fair use in the arts world to opening up the architectures for knowledge access in the world of science. The Harvard Law School professor made a compelling case for the ethical obligation of scientists [at least those in academia] to provide universal access to the knowledge they discover, and chastised those who practice exclusivity - those who choose elite-nment over enlightenment - as "wrong".

I intially discovered the talk by following a @BoingBoing tweet to a two-paragraph blog post about Lessig on science, copyright and the moral case for open access, which included an embedded 50-minute video of Lessig's presentation at CERN on 18 April 2011 entitled "The Architecture of Access to Scientific Knowledge: Just How Badly We Have Messed This Up".

I rarely take the time to watch any videos, and having seen many of Lessig's talks about copyright reform - live and online - I was preparing to simply retweet the link, and move on. But having been thoroughly irritated by a personal encounter with barriers to knowledge access during the [free] webcast from the otherwise enlightening and engaging Behavioral Informatics for Health event earlier this week, I was motivated to see and hear what Lessig had to show and tell. I was excited to discover that Lessig's talk was far more relevant to health and medicine - and the kind of universal access to crucial information that might help those outside of elite schools and hospitals better achieve positive health outcomes - than I initially anticipated.

Before sharing some of Lessig's insights and observations, I want to share the source of my personal irritation in encountering preventative measures erected to limit access to one of the two journals being showcased at the behavioral informatics event, a special issue on Cyberinfrastructure for Consumer Health from the American Journal of Preventative Medicine. When I investigated options for accessing some of the interesting articles being mentioned during the event, I discovered that

THIS SITE DOES NOT SUPPORT INSTITUTIONAL ACCESS

AJPM pricing options for individuals include a 12-month subscription to the journal for $277, or the purchase of individual articles for $31.50 each. The special issue being showcased at the event included 27 articles, which translates into a total cost of $850 for purchasing this one issue of the journal, whose mission is "the promotion of individual and community health".

In contast, all the articles from the inaugural issue of the other journal being showcased at the event, Translational Behavioral Medicine, are freely available online, a policy much more in alignment with its mission:

TBM is an international peer-reviewed journal that offers continuous, online-first publication. TBM's mission is to engage, inform, and catalyze dialogue between the research, practice, and policy communities about behavioral medicine. We aim to bring actionable science to practitioners and to prompt debate on policy issues that surround implementing the evidence. TBM's vision is to lead the translation of behavioral science findings to improve patient and population outcomes.

I hope to post another blog entry with some notes from the behavioral informatics event, but in this post, I want to continue on with some of Lessig's commentary about science, knowledge, access and elitism. I'll embed a copy of the video below, follow it with some notes and partial transcriptions I made while watching, and finish off with a brief riff on science as a remix culture.

The Architecture of Access to Scientific Knowledge from lessig on Vimeo.

Lessig begins by talking about two motivations for his talk. The first is the late Supreme Court Justice Byron White, who was considered a liberal when appointed to the court by President John Kennedy in 1962, but became progressively more conservative, as evidenced in his authoring of the majority opinion in the 1986 case of Bowers v Hardwick, which upheld the criminalization of sodomy laws, and included the following statement:

Against this background, to claim that a right to engage in such conduct [sodomy] is "deeply rooted in this Nation's history and tradition" or "implicit in the concept of ordered liberty" is, at best, facetious.

Lessig calls this the White effect:

To be liberal / progressive is always relative to a moment, and that moment changes, and too many are liberal / progressive no more.

The second, more recent, motivation was a Harvard Gazette article about Gita Gopinath, a macro-economist at Harvard who was born in India. After mentioning that Gopinath, a tenured professor, would like to have more time to read books that are not textbooks, the article concluded with the following sentence:

Still, the shelves in her new office are nearly bare, since, said Gopinath, “Everything I need is on the Internet now.”

Lessig notes:

If you're a member of the knowledge elite, then you have effectively free access to all of this information, but if you're from the rest of the world, not so much.

He goes on to observe:

The thing to recognize is that we built this world, we built this architecture for access. This flows from the deployment of copyright, but here, copyright to benefit publishers, not to enable authors. Not one of these authors gets money from copyright, not one of them wants the distribution of their articles limited, not one of them has a business model that turns upon restricting access to their work, not one of them should support this system.

As a knowledge policy, for the creators of this knowledge, this is crazy.

Lessig tells the story of his third daughter, who was diagnosed with jaundice shortly after her birth, and the concern he felt when the doctor expressed unexpected concern about possible complications. Due to his status as a Harvard professor, he had institutional access to many relevant articles in medical journals. When he calculated the cost for purchasing the 20 articles he tracked down, it would have cost $435 for someone who did not enjoy his level of elite status.

Even those journals which granted free access sometimes engaged in regulating access to parts of articles. For example, a February 2002 article on "Hyperbilirubinemia in the Term Newborn" in American Family Physician was available for free ... except for a crucial missing chart:

TABLE 4
Management of Hyperbilirubinemia in Healthy Term Newborns

The rightsholder did not grant rights to reproduce this item in electronic media. For the missing item, see the original print version of this publication.

Rather than architecting systems to maximize access to knowledge, Lessig suggests that "we are architecting access to maximize revenue" He also shares a chart from An Open Letter to All University Presidents and Provosts Concerning Increasingly Expensive Journals by Theodore Bergstrom & R. Preston McAfee on Journal Prices by Publisher and Discipline Type that shows the cost-per-page of purchasing articles from for-profit journals was 5 times higher, on average, than the cost in not-for-profit journals, leading him to wonder whether academia is creating it's own RIAA:

Really Important Academic Archive: RIAA for the Academy?

Lessig is co-founder of the Science Commons, a translation of the Creative Commons license to promote open access in the scientific community, with four key principles:

1. Open access to literature
2. Access to research tools
3. Data should be in the public domain
4. Open cyberinfrastructure

Lessig championed the Public Library of Science (PLoS) as an exemplar of these principles. Personally, I am very excited about the PLoS publication of a landmark study this week on Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network, by Weitzman, et al., based on data from the TuDiabetes online community, and another recent study by Wicks, et al., based on PatientsLikeMe community members with amyotrophic lateral sclerosis (ALS) published - and freely available - in the journal Nature Biotechnology, Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Having recently read a critique of Science 2.0, cataloging the shortcomings and/or failures of several traditional for-profit publishers to effectively capitalize on the Web 2.0 platform, it is encouraging to see some promising progress in sharing knowledge about chronic conditions in the not-for-profit world.

Lessig proceeds to review some of the issues surrounding the use - and misuse - of copyright in the arts, but I have already written about many of his arguments and examples from that domain in my notes from his keynote at the 2009 Seattle Green Festival. I'll simply note that in viewing his examples in this context, I was struck by the revelation that on a very basic level,

science is a remix culture

Traditionally, much of science has been the exclusive domain of professional scientists, who typically go to great lengths to cite prior work that is related to the experiments and results they report in peer-reviewed publications (indeed, some of the peers reviewing work submitted for publication are among those who are - or [feel they] should be - cited). With the rare exceptions of paradigm shifts, most of science is incremental in nature, and each increment represents a remix with a few added ingredients.

There are several promising signs that people without PhDs, MDs and other "terminal" credentials can participate more fully in the scientific discovery and dissemination process. I enumerated several of these efforts in an earlier post on platform thinking, but in the context of health and medicine - and Harvard - I do want to mention Doc Searls' recent post on Patient-driven health care in which he expands the idea of the patient as a platform and mentions efforts by Brian Behlendorf, Jon Lebkowsky, Adrian Gropper and “e-Patient Dave” deBronkart to promote a vendor relationship management (VRM) model in which patients - and the data about their conditions - will be better able to participate in peer-to-peer collaborations with health care and health information technology professionals.

Lessig laments the current system in which authors - and peer reviewers - of scientific publications do much of the work for free, while for-profit publishers derive nearly of the financial benefits, and do so through restricting access to the knowledge produced by the authors. Given that much of the data used in the experiments reported in professional medical publications comes from patients (the PatientsLikeMe and TuDiabetes studies being particularly notable examples), it makes all the more sense to make the results of these experiments available to all patients ... and at some point, we all are - or will be - patients who might benefit from universal access to this knowledge.