Re: Intellectual property & copyright

[Norman Bauman nbauman@xxxxxxxx]

Leslie,

That's not necessarily true.

I covered a meeting of a National Institutes of Health conference on
interstitial cystitis for Urology Times. This is a poorly-understood
bladder disease which causes some of the worst pain known to medicine. I
met people in the patient groups who were suffering from it; it was quite
poigniant. A couple of them were running web sites, some of which were
quite sophisticated.

It turned out that many urologists around the country didn't know much
about interstitial cystitis and weren't diagnosing it, so patients didn't
even know what they had and what inadequate treatments were available. A
lot of them never found out until they researched it on the Internet
themselves.

I wrote a piece addressed to urologists, based on among otther things an
interview with a doctor who herself had interstitial cystitis, and
explained to urologists who didn't know much about it how to diagnose and
treat the disease step-by-step.

This was probably the most useful piece of writing I ever did in my life. I
was telling urologists something they actually didn't know and should know,
and with the information they could get from my article, they could
alleviate real suffering.

I also wrote a lengthy series of articles on the current research basic
research.

The patients who were running the web sites and patient groups asked me if
they could reprint my articles. I told them to go ahead, except that, as a
courtesy, I wanted to check with Urology Times first. (Legally, I owned the
copyright, but I couldn't bite the hand that feeds me.)

I sent my editor an email. He sent it up the corporate hierarchy. It
circulated among lawyers and marketing people who weren't sure what they
were doing because the Internet was new. Finally, almost a year later, one
of the web sites got permission to post a couple of my articles.

I'm a news reporter. I want to report news. I want to tell people things
that are important to them, when it's still new, and I want to be the first
person to tell them. This conference was big news to a small but
significant number of people. And my advice to urologists for treating
interstitial cystitis was also important.

It was agony for me to sit on top of this valuable information that I had
written, when people around the country and the world were suffering
because they didn't have it. I took my stories and wrote a tight, condensed
summary and posted it on usenet, just to get some information out.

A lot of magazines wouldn't give permission to post this stuff on the
Internet at all.

There was no way I could make money out of this, and even if I could, I
wouldn't want to make money by selling stories to people who are disabled
in pain (and usually unemployed). What am I going to do, ask this poor
unemployed woman for $5?

In a situation like this, I think it would be right for a patient, for
example, to post my stories to a web site or a usenet group, and make this
information available free to anyone who wants it, for non-commerical
purposes. Whatever the law says -- it would be right.

If a pharmaceutical company wanted to collect my stories for a patient
brochure, that's another story. But distributing it on the Internet doesn't
compromise those commercial rights. It even makes it more likely, if my
stories had a following on the Internet, that a pharmaceutical company
would hire me for an update.

So I advocate the notion that intellectual property should be there for the
taking, under certain circumstances, and I'm just as creative as you are
(let's see you go to a National Institutes of Health conference on medical
research and write a dozen stories that will tell medical specialists what
they missed).

I'm a science writer. I write my stories because other people have
generously shared their ideas and information with the scientific
community, and with me. I've benefitted from the community and I owe them
something back. If my writing is so useful that it can actually alleviate
suffering, and help people to get the right medical treatment, then they
are welcome to it. I'm not going to charge them $15 or $25 a story like the
medical journals do.

There are limits -- if TAP Pharmaceuticals wants to use my stories, they
have enough money to pay their way, and to pay me so I'll be able to write
up the next conference. And they do.

As the Wife of Bath said, "There is no one so niggard I wol werene, not to
let another light a candle at his lanterne."

Norman


At 04:18 PM 8/29/02 -0400, Leslie Bialler wrote:

>Obviously I agree with Jordan. It would seem quite probable to me that the
people
>who advocate the notion that intellectual property should be there for the
taking
>are precisely the people who possess little if any creativity, but are
cunning
>enough to demand that those who are creative share the fruits of their
creativity
>with them and receive nothing in return. (By this logic you would expect a
farmer
>to, say, give you some of his peaches free because you deserve a peach
today.) I
>am obviously not such a person. I do not for one second suppose that _I_
here,
>have the right to take _your_ creation there, and do with it what I wish.


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Norman Bauman
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