The WELL: inkwell.vue.146: On the Scene: CFP 2002

#167: Jon Lebkowsky (jonl) Thu 27 Mar 03 19:05

Thu, 27 Mar 2003 19:05:00 PST

I can't be there, but I will be in Santa Clara Apr 21-25 for Emerging Technology. We should set up something for that one, too...? [Read entire topic]

#166: Gail Williams (gail) Thu 27 Mar 03 15:44

Thu, 27 Mar 2003 15:44:00 PST

This event is about to unfold (during wartime!) for 2003. The line-up is interesting, all kinds of people and issues to catch your eye: http://www.cfp2003.org/

Wish i could be there. Some of these sound great, some classic CFP fodder, some new and exciting -- here's a smattering of sessions:

The Patriot II and Electronic Surveillance Internet Architecture & Free Speech Human Rights and the Internet China - Internet Filtering and Free Expression Promoting Human Rights Online During Wartime Video Surveillance Tour of Manhattan by the Surveillance Camera Players Can Free Speech Survive the New Intellectual Property Regimes [Read entire topic]

#165: Gail Williams (gail) Fri 17 May 02 10:04

Fri, 17 May 2002 10:04:00 PDT

Thanks, Declan! [Read entire topic]

#164: Declan McCullagh (declan) Fri 17 May 02 07:30

Fri, 17 May 2002 07:30:00 PDT

I've finally (sorry for the delay) posted my CFP and Politech dinner photos on mccullagh.org...

CFP photos: http://www.mccullagh.org/theme/cfp02-highlights.html http://www.mccullagh.org/theme/cfp02.html http://www.mccullagh.org/theme/eff-pioneer-awards-apr02.html http://www.mccullagh.org/theme/bigbrother-apr02.html

Politech dinner: http://www.mccullagh.org/theme/politech-dinner-apr02.html [Read entire topic]

#163: Jon Lebkowsky (jonl) Tue 23 Apr 02 13:24

Tue, 23 Apr 2002 13:24:00 PDT

Ignore who?

heh. [Read entire topic]

#162: Gail Williams (gail) Tue 23 Apr 02 11:34

Tue, 23 Apr 2002 11:34:00 PDT

I know I don't. [Read entire topic]

#161: Martha Soukup (soukup) Tue 23 Apr 02 11:32

Tue, 23 Apr 2002 11:32:00 PDT

Well, no. [Read entire topic]

#160: Amazon.com sales ranking: 1,304,455 (wendyg) Tue 23 Apr 02 07:15

Tue, 23 Apr 2002 07:15:00 PDT

soukup: so would I. but would you ignore ME?

wg [Read entire topic]

#159: Gail Williams (gail) Tue 23 Apr 02 00:02

Tue, 23 Apr 2002 00:02:00 PDT

Notes from health privacy session, Thursday:

Dr. G Fowler addressed genetic privacy. http://www.geneforum.org/ Oregon genetic privacy site.

300 million samples are held in the nation's tissue banks. "You look like a room of healthy normal people, your tissue samples should each show five bad genes on the average..." and the data may pose privacy risks to your blood relatives, he told us.

Privacy is sometimes breached to give patients needed care when something is identified in a survey of tissue samples. Privacy is also breached sometimes after studies, to find out what the subjects died of if they are dead. Some flexibility has been part of the system so far, though federal studies are better protected than those paid for in other ways.

Who owns genetic information? Oregon had tried to establish that your genetic material is yours. Question is still a good one. Who owns your tissue or blood sample? Who owns the information? Do your relatives, cops, doctors, the military, the courts have rights to the information or the tissue? Should pharmaceutical companies have rights to your data? How do we protect people from documented discrimination while letting research continue? On the geneforum site, people overwhelmingly felt that violations should be felonies, though they are only minor misdemeanors under Oregon law.

When you are sick, you want all useful access to your records. The society in general wants research, wants epidemiology if there is an outbreak of a communicable disease, and wants privacy. These needs may conflict. Opt in consent for release to your employer is a strong value, and is currently at risk during HIPAA review.

13% of our GDP is health. Every health plan will have a staff privqcy expert by next year. There's a huge demand for HIPAA privacy officers in health institutions.

Background in short is that Congress failed to pass a privacy bill to go with new computerized reimbursement and medicare payments systems for hospitals, and lacking legislation the HIPAA rule went into effect as a consequence. It was drafted by Clinton administration late in 2000. At first it seemed Bush would overturn all of it, but he retained most major sections.

The Bush changes, even though fewer than expected, would weaken the federal health privacy regulation, and the final day for comment is this FRIDAY, the 26th. There's a letter-writing campaign with a focus on two issues, both eliminating written consent before medical records are disclosed, and permitting health plans and drug stores to engage in marketing without having to get permission

To see an advocate's point of view and to get letter writing help, see http://healthprivacy.org or for the HMO view, see http://www.aahp.org

To read the regulation and call for comments itself, see http://www.hhs.gov/ocr/hipaa

The Bush changes also gave parents more rights to the medical records of their kids (including reproductive and mental health records) but set it up so that more protective state laws exist, they take precedence, so that was a relief to many who'd expected him to force that policy nationally.

The Kaiser rep -- Mary Henderson -- spoke of quandaries and over-zealous regulations, such as a proposed rule that listed kinds of private data which must not go with medical data for research. The list included date of birth (needed to understand age-related desease) and location of treatment (needed by institution to redress any problems at specific facilities). These costs of compliance were interesting.

One interesting question was about the DNA collected to identify victims in the world trade towers and whether the feds would keep the data even though it could reveal secrets of the living relatives. The panelists didn't know what the status is, but the relatives should follow up.

It was a worthwhile round-up and there is time to act on the federal regulations. [Read entire topic]

#158: Martha Soukup (soukup) Mon 22 Apr 02 23:08

Mon, 22 Apr 2002 23:08:00 PDT

Well, I'd talk to Lenny for half an hour but it's just because I've only seen him once or twice in five years. [Read entire topic]