I’m beginning to think about my presentation at the American Society

for Public Administration conference next Monday. (Click for the practical

details.) My title is "Local Governments and Independent Civic

Websites." I submitted the following abstract: "Communities

benefit when they have strong, broad-based, active, civic organizations.

Today, there is a need for new civic organizations or networks that are

devoted to producing public goods for distribution on the Internet: things

like searchable databases of local assets, interactive digital maps, structured

forums for informed public deliberation, alternative local news sources,

and art and history projects. These goods are not widely available, because

businesses have not learned how to make money from them, and they are

too expensive to be produced by individual citizens. However, for a reasonable

price, local governments can support such work without compromising its

independence."

In between phone calls on practical issues, I worked on my paper concerning

the reliability of medical information on the Web. As a little experiment,

I tried searching for "mononucleosis" on Google. (MEDLINEplus,

the ambitious federal portal, notes that "mononucleosis" is

one of the most common search terms on its site. Since the disease is

not serious but lacks a cure, some reasonable patients and parents may

want to diagnose it and treat the symptoms on their own.)

I noticed a few things:

• First, MEDLINEplus does not appear very prominently among the search

  results. Sites with much less funding and institutional support, and

  with much less detailed information, are at least as prominent on the

  Web. Indeed, a Hungarian student who once had mononucleosis and has

  written 700 words on the subject is almost as prominent as MEDLINEplus,

  which is a major product of a federal agency with a $250 million annual

  budget.

• Second, it is difficult to make an accurate diagnosis of mononucleosis

  using the Internet, because its symptoms vary and resemble the symptoms

  of other diseases (including HIV/AIDS). There is a fairly reliable blood

  test that only a physician can conduct. Therefore, many people who suspect

  that they have mononucleosis will learn from the Web that they may be

  right, but their diagnosis must be confirmed by a physician. The value

  of using the Internet in this case is somewhat limited.

• Third, you are more likely to find yourself using MEDLINEplus if you

  know that you are interested in "mononucleosis" (a scientific

  term), rather than if you only know that you have fever, headache, swollen

  glands, tiredness, and malaise (the main symptoms of the disease). If

  you look for symptoms, most of the sites you find with Google will be

  irrelevant or unreliable.

• Fourth, the apparent reliability of prominent sites that describe

  mononucleosis differ widely, but the main information that they offer

  is similar (with the exception of the material on homeopathy that appears

  in some of the non-governmental sites.) Even the 700-word site constructed

  by a Hungarian student offers fundamentally the same message as MEDLINEplus—on

  this particular topic.

I spent some time writing my article about Medline

as a "gold standard" of medical advice and information of the

Internet. No individual knows enough about medicine to make a direct assessment

of the information presented on this huge portal, which adds half a million

new scientific references every year. To decide if the material on Medline

is reliable and useful, we cannot apply what my friend Anton Vedder calls

"primary epistemic criteria," such as "consistency, coherence,

accuracy, and accordance with observations." But we can use what

he calls "secondary epistemic criteria," and they are all in

Medline’s favor. We can easily see that it is well-funded, separated from

profit-seeking companies, and run by distinguished professional organizations

and bodies.

So should every American who goes online for medical information consult

only Medline and those sites to which Medline links? One problem is that

government officials, including medical doctors, may have political agendas.

In 2002, various agencies of the United States Government removed information

about condom use and abortion from their Websites, allegedly because elected

politicians favored sexual abstinence before marriage and opposed abortion

on moral or religious grounds. For example, the National

Cancer Institute had posted information denying a link between abortion

and breast cancer until an anti-abortion Member of Congress objected,

calling it "scientifically inaccurate and misleading to the public."

Another federal Website

removed its positive assessment of condoms’ role in preventing the transmission

of disease. After the removal was criticized, similar material reappeared

online with the following additional text (in bold): "The surest

way to avoid transmission of sexually transmitted diseases is to abstain

from sexual intercourse. …" A liberal Member of Congress said,

"We’re concerned that their decisions are being driven by ideology

and not science." The President of the Planned Parenthood Federation

of America put the charge more strongly: "They are gagging scientists

and doctors. They are censoring medical and scientific facts. It’s ideology

and not medicine." [See Adam Clymer, "Critics Say Government

Deleted Sexual Material From Web Sites to Push Abstinence," The

New York Times, November 26, 2002, p. A18; and Adam Clymer, "U.S.

Revises Sex Information, and Fight Goes On," The New York Times,

December 27, 2002, p. A15.]

There is controversy about the reasons behind these particular choices

to post, remove, and revise online information. However, we need not resolve

the facts in these cases to see that government Websites may be written

on the basis of "ideology and not medicine." Actually, all

science is thoroughly imbued with normative choices about what is

important to study, what outcomes should be valued, and how much risk

to tolerate. Thus a more sophisticated critic might say something like

the following: "The Federal Government presents its medical websites

as a ‘gold standard’ and claims that nothing but dispassionate science

determines decisions about what to include. In reality, all medical advice

involves an element of normative judgment, whether deliberate or unconscious.

However, because government Websites are lavishly funded and linked to

the organized medical profession, they threaten to monopolize discourse

about important topics. Hence, we demand that these Websites disclose

their normative or ideological leanings and refer explicitly to alternative

perspectives."

A bad day for blogging, because I’m very busy with the technical details

of preparing our joint report with the Carnegie Corporation, the Civic

Mission of Schools. Choosing paper stock is not interesting to write

about. I did quickly email the National

Library of Medicine to ask about the budget and mission statement

for Medline. The reason

is that I am supposed to work with some Dutch colleagues on a project

concerning "the reliability of medical information on the Internet."

(We are funded by the Netherlands government, which is one reason I took

the job.) The tension I hope to explore is between medicine as a standardized

discipline and the Internet as a wide-open medium. Medicine has been standardized

because there is supposed to be "one best treatment" for a given

condition (when fully described), based on the best scientific evidence

available at the time. Although physicians still have great discretion

and often offer divergent advice, powerful forces work to standardize

medicine. It is illegal to practice medicine without a license or to use

or sell regulated drugs without a prescription. To gain a medical license,

one must pass through an elaborate training and socialization process,

including graduation from an accredited medical school and apprenticeship

under experienced physicians. One then bears marks of membership in an

exclusive body: diplomas on the office wall, a white lab coat, an expectation

that one is to be addressed as "doctor." The Internet, poses

a threat—not only to these professional prerogatives—but also

to the "one best treatment" ideal. Someone who wants to locate

medical information or advice online can easily find herself looking at

a mix of official recommendations and highly eccentric ideas promoted

by laypeople. It is considerably harder to tell the difference between

official and unofficial advice than it was in the old days, when the main

sources of information were people in white coats and refereed journals.

In response, the National Library of Medicine, a $250 million/year federal

agency, has created a single Website that lays out the "one best

treatments." I am going to try to assess the result. To put my basic

question boldly: should we hope that everyone who goes online for medical

advice goes to Medline? If yes, what policies can the government adopt

to channel people there? If no, why not?