Saturday, December 18, 2004

Silencing the "Whistle Punks"

As is mentioned in our blog description (unless it has fallen into another soft-ware black hole, as it does periodically), a major manifestation of the current health care system dysfunction are attacks on free speech and academic freedom in the health care context. The covering up of unfavorable data on selective serotonin uptake inhibitor (SSRI) anti-depressants was only the latest example of this.
In trying to preserve the rights of researchers to present their findings, teachers to teach, and clinicians to talk to their patients, and expose quality problems, we can use all the help we can get. But we haven't gotten much help. That's why this story is so relevant.
Today the NY Times reported about troubling problems with the leadership of the American Civil Liberties Union (ACLU), which one might have thought ought to have been a champion for free speech in health care (as well as elsewhere). The pivotal factor was the decision of the ACLU executive director to use sophisticated software to develop detailed data files on everyone who contributed more than $20 to the organization, in apparent violation of the ACLU privacy policy, and worse, apparently in direct contradiction to the organization's core mission, which includes protecting privacy rights of American consumers. For the leadership of a not-for-profit to take actions in direct contradiction to the organization's core mission is a violation of their duty. Furthermore, when the Vice President of the ACLU board, Michael Meyers, found out and objected, the first thing done was to change the privacy policy as posted on the web. Finally, when the Vice President tried to get on a board executive committee conference call on the data mining operation, as was apparently his right, he was thrown off the call.
Where did my title come from? The name given to dissident board members like the Vice President by other board members, "whistle punks."
No wonder the ACLU has not been of much help on the free speech in health care front.

1 comment:

Kevin C. Fleming said...

Other bloggers have commented that, in response to this controversy, the ACLU has modified their rules on the use of member information so that no conflict is apparent any longer. That is, they oppose such misuse when done by others, but not if the ACLU does it.