[A2k] NYT Essay on Cancer Data? Sorry, Can't Have it

[Manon Ress]

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[ Picked text/plain from multipart/alternative ]
Essay
Cancer Data? Sorry, Can=92t Have It
http://www.nytimes.com/2008/01/22/

By ANDREW VICKERS
Published: January 22, 2008

Not long ago, I asked a respected cancer researcher if he could send
me raw data from a trial he had recently published. He refused.
Sharing data would make the study team members =93uncomfortable,=94 he
said, as I might use this to =93cast doubt=94 on their results.

I=92d heard this before: as a statistician who designs and analyzes
cancer studies, I regularly ask other researchers to provide
additional information or raw data. Sometimes I want to use the data
to test out a new idea or method of statistical analysis. And knowing
exactly what happened in past studies can help me design better
research for the future. Occasionally, however, there are statistical
analyses I could run that might make an immediate and important impact
on the lives of cancer patients.

A few years back, a study was published showing that a certain drug
could prevent one type of cancer. The problem was that the drug didn=92t
work very well and had some side effects, so almost no one used it. At
the same time, a colleague showed that a protein found in the blood
could predict which patients were at high risk for cancer. We put two
and two together and realized that we could use the protein test to
work out which patients would benefit from the drug.

To make things even easier for us, it turned out that the researchers
who had conducted the trial had actually measured this protein in all
their patients. So we wrote to them and asked whether they would share
their data. They refused on the grounds that they might consider a
similar analysis at some point in the future. But years have passed,
no such analyses have been forthcoming and few patients are benefiting
from what could be a very effective drug.

Given the enormous physical, emotional and financial toll of cancer,
one might expect researchers to promote the free and open exchange of
information. The patients who volunteer for cancer trials often suffer
through painful procedures and harsh experimental treatments in the
hope of hastening a cure. The data they provide ought to belong to all
of us. Yet cancer researchers typically treat it as their personal
property.

I=92m sometimes told that sharing data would violate patient privacy =97
though changing names to codes is easy enough. Other requests are
killed by red tape. When a colleague and I wanted to analyze the data
from a completed breast cancer trial, merely getting permission to
speak to the study=92s organizing committee required a one-hour phone
call with the scientist in charge of the agenda. Only after another
one-hour call with the committee itself were we allowed to submit a
formal proposal =97 to which we received no response.

Most refusals are more blunt. =93I am not prepared to release the data
at this point,=94 one researcher wrote me, even though he was a
government employee and his trial, which had been published several
years earlier, was federally financed.

Dr John Kirwan, a rheumatologist from the University of Bristol in
England, has studied researchers=92 attitudes on sharing data from
clinical trials. He found that three-quarters of researchers he
surveyed, as well as a major industry group, opposed making original
trial data available. It is worth restating this finding: most
scientists doing research on how best to help those in pain, or at
risk of death, want to keep their data a secret.

Dr. Kirwan went on to ask his subjects why. Their reasons were
entirely trivial: one cited the difficult of putting together a data
set (wouldn=92t this have to be done anyway in order to publish a
paper?); another was concerned that the data might be analyzed using
invalid methods (surely a judgment for the scientific community as a
whole). This is something of a clue that the real issue here has more
to do with status and career than with any loftier considerations.
Scientists don=92t want to be scooped by their own data, or have someone
else challenge their conclusions with a new analysis.

Yet this is exactly what cancer patients need. They want new results
to be published as quickly as possible and to encourage a robust
debate on the merits of key research findings.

An acquaintance of mine was recently diagnosed with breast cancer, and
it gives me some comfort to know that there are drugs she can take
that will improve her chance of cure. We know that these drugs are of
benefit because more than 20 years ago, a group of Oxford
statisticians persuaded researchers around the world to pool data from
their breast-cancer trials.

With the rise of the Internet, sharing data has become a simple
matter. Geneticists, for example, publish their raw data on a central
Web site. The data from medical trials are given freely by patients.
They should insist that these belong to science as a whole.

Andrew Vickers is a biostatistician at Memorial Sloan-Kettering Cancer
Center in New York.









***************************************************************************
Manon Anne Ress
manon.ress@keionline.org,

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Il vaut mieux remuer une question, sans la d=E9cider, que la d=E9cider,
sans la remuer.
Pens=E9es, essais, maximes et correspondance de J. Joubert  p.249
http://visualiseur.bnf.fr/Visualiseur?Destination=3DGallica&O=3DNUMM-88671
Translation: It is better to debate a question without settling it
than to settle a question without debating it