Tuesday, August 01, 2000

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The New York Times Company Seeking Donors of DNA for a 'Gene Trust'
[requires 'free' registration]
"Wanted: your genes.

A California start-up called DNA Sciences is introducing a Web site today that will recruit people to donate their DNA to help find genes that cause disease. The company, which has James D. Watson, a discoverer of the DNA double helix, as a director and James H. Clark, Netscape's founder, as an investor, hopes to get 50,000 to 100,000 people to contribute to its "gene trust" by appealing to their altruism."

"Under DNA Sciences' program, volunteers answer on-line questionnaires about their medical history, and their family's. The company will then send someone to their homes or offices to collect blood samples. Healtheon/WebMD, the medical Web site, owns a stake in DNA Sciences and will be used to help recruit patients.

Donors will not be paid, as is true with the other companies as well."

redux [07.19.00]
Individual.Com Healtheon/WebMD (HLTH) and Netscape (NSCP) Founder Clark
"Clark is the only person in history to have guided three companies from inception to becoming public companies with more than one billion in market cap each. In addition to privately held Shutterfly and Mycfo.com, Jim is currently hard at work on his sixth startup: DNA Sciences."

"DNA Sciences is focused on exploiting the genome information and specifically finding the genotypes variations in genes that give rise to the genes that are associated with certain diseases. The variations in those genes that give rise to variance of that disease and treatment for that disease so the company is heavily focused on gene applications in the genome area."

"Healtheon was driven four or five years ago when I started the company in attempt to try to bring the internet to what I thought was the most inefficient industry in the world, the U.S. Healthcare system. I am still positive and bullish about the company's future. In the case of DNA Sciences it was more because I think it is more immediate. It has a tremendous potential. I put the two companies together and WebMD has a lot of disease affinity groups, if you will. People with breast cancer, prostate cancer, hepatitis, a variety of ailments and we can collect blood samples from people in the groups and identify genes and put them in a specific category to see what the best treatment is."

redux [06.17.00]
Stanford Medical Informatics Preprint Archive Bioinformatics in Support of Molecular Medicine
"Basic biological science has always had an impact on clinical medicine (and clinical medical information systems), and is creating a new generation of epidemiologic, diagnostic, prognostic, and treatment modalities. Bioinformatics efforts that appear to be wholly geared towards basic science are likely to become relevant to clinical informatics in the coming decade. For example, DNA sequence information and sequence annotations will appear in the medical chart with increasing frequency. The algorithms developed for research in bioinformatics will soon become part of clinical information systems. In this paper, I briefly review the intellectual roots of bioinformatics and how the field has evolved in the last few years. Fortunately, a core set of scientific paradigms have provided a focus to the field. Even in this short period, however, there has been a change in the nature of the questions being asked and the types of experiments being attempted. These changes are consistently leading bioinformatics towards problems of clinical relevance. Some molecular biology information systems already have important clinical implications. I will discuss the differences in the culture and approach to science of clinical informatics and bioinformatics, but will argue that the two disciplines share important intellectual challenges which make them very closely allied fields (despite the cultural differences). Finally, I will identify a few areas common to both disciplines where developments in one field may help catalyze faster progress in the other. For example, useful database integration technologies have (arguably) matured more rapidly within bioinformatics than in clinical informatics. At the same time, clinical informatics embraced the idea of controlled terminologies relatively early, and offers lessons to those in bioinformatics attempting similar tasks."

redux [05.15.00]
The New York Times Who Owns Your Genes?
[requires 'free' registration]
""I just wanted to do something good," Mr. Fuchs said. "But once money came into the picture, why not have it be shared with me?"

These days more and more patients are asking the same question. Laboratories offer tests for more than 700 human genes, with more being discovered almost daily. And, for almost every gene, some medical institution or some company owns a patent on its use.

"The value of patients' tissues has potentially gone up enormously," said Dr. Barry Eisenstein, the vice president for science and technology at the Beth Israel Deaconess Medical Center in Boston. But, Dr. Eisenstein said, patients whose cells provided the genes that have been patented are almost never compensated. "

redux [02.25.00]
Science U.K. Plans Major Medical DNA Database
[summary - can be viewed for free once registered]
"Following the examples of Iceland, Sweden, and Estonia, the United Kingdom is drawing up plans to create a national database linking the DNA of 500,000 of its citizens to their medical records and lifestyle details. Its main goal is to tease apart the genetic and environmental components of conditions such as cardiovascular disease and cancer and, eventually, to come up with new drugs to treat--or even prevent--these conditions. An expert panel is currently hammering out a strategy for setting up the database and is due to report its recommendations next month.”

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."