Tuesday, October 31, 2000

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Healthcare Informatics Truth AND Consequences
"Space has been called the last frontier. But now modern science has begun exploration of another new territory: the human genome. In mapping this instruction book of life, researchers are becoming able to pinpoint genes for a wide array of diseases and to guide creation of revolutionary new drug treatments.

But this new age of discovery also is resurrecting old issues of privacy and discrimination. Medicine can now accurately predict who will contract certain illnesses, such as Huntington's disease, but it still cannot save patients from its debilitating effects. On the other hand, a woman might test positive for a gene predisposing her to breast cancer but nevertheless live a long, cancer-free life.

How can medical records be protected so patients are free to be tested for genetic defects without losing health insurance or being unfairly eliminated on job applications? Those who work with medical records--whether electronic or paper-based--will undoubtedly come face-to- face with such privacy considerations very soon, if they haven't already."

redux [05.15.00]
HMS Beagle Caught in secret tests
[requires 'free' registration]
"Lawrence Berkeley National Laboratory in California has settled a class-action suit over genetic and medical testing for more than $2 million. The suit was brought by employees who charged that they were discriminated against and that their privacy was invaded when they were tested for pregnancy, syphilis, and genetic traits without their knowledge. Each of the plaintiffs will get $25,000, and other employees may get $2,000 each. The settlement also covers legal fees estimated at $440,000.

Reference: Lehrman, S. 2000. Medical tests cost Lawrence Berkeley $2.2 million. Nature 405(6783):110."

redux [07.18.00]
ComputerUser Medical Privacy Concerns Heightened by Genome Mapping By Brian Krebs, Newsbytes
"Privacy advocates, still reeling from last year's passage of legislation that allows banks and insurance companies to share personal information, are bracing against a new threat to the confidentiality of medical and financial information: The Human Genome Project.

"Latanya Sweeney, professor of computer science and public policy at Carnegie Mellon University, said currently more than 40 US states have laws requiring hospitals to make available to insurance companies and researchers certain information about each visit they receive, including the diagnosis, birth date, ethnicity, gender and Zip code of all patients discharged.

While state regulations say such categories are sufficiently anonymous to conceal the identity of patients, Sweeney said companies can and do match such information with personally identifiable data, using just a few publicly available resources."

""It may surprise some to know that 87 percent of the US population is uniquely identifiable today by just their birthday, gender and zip code," Sweeney said."

"Sweeney said the stakes become much higher when genetic information comes into play. For instance, she said, gender can usually be identified using just the base of a person's DNA sequence. Using a larger chunk of DNA information, researchers can infer particular diseases by catalogued and known sequence patterns. Link those sequences to publicly available hospital data, and you have an undeniably complete picture of an individual's most private information, Sweeney said."

redux [06.08.00]
GeneLetter Managed care needs to prepare for biotech revolution
"Unless they begin preparing now, health plan executives and medical directors could be blindsided by the revolution in medicine that will come with the mapping of the human genome, members of a managed care conference keynote panel warned on Monday."

"You think the genetic revolution is still 3-to-5 years off for your health plans," said Dr. Billings, who also serves as deputy director and chief medical officer of the Heart of Texas Veterans Health Care System. "I have to tell you, you better wake up. The tsunami is on the horizon," he warned.

For example, Schering-Plough's Dr. Haverty predicted that gene-based information could lead to the identification of many different types of asthma. As a result, health plans will need to develop many new codes and to upgrade their information systems, he said."

redux [03.30.00]
JAMIA Integration and Beyond: Panel Discussion
"I think one of the toughest things we all have to deal with is updating our dictionaries. In the simplest cases, the name of an organism is changed and we just have to do the maintenance. It is tougher, when, as with Citrobacter, they do genetic studies and say, "Oh, it's really six different organisms, not one." We have the human genome project coming very quickly. Even that is just the tip of the iceberg. We're not only going to see all the genes; we're then going to see clinical tests based on gene expression. Essentially, you'll be able to look at something on the order of 180,000 gene products and whether they're up or down regulated. How are we going to integrate such an incredible amount of data at a time when we're going to also be changing how we think about these processes? Classification and simple mapping are not going to work, because the lumpers and splitters are going to be arguing furiously on a daily basis."