Wednesday, June 28, 2000

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Wired Health Care: Genomics' Final Act
"A slew of new genetic methods, tests, and knowledge promises to revolutionize medicine now that scientists have cracked the human genome map. But those same advances could land health-care providers and insurance companies in a quagmire of sticky issues, including conflicts with patient privacy."

"Yet in order to proceed with SNP research, scientists need to know identifying characteristics of populations, such as whether they smoke, their exposure to chemicals, infectious diseases they may have encountered, and what drugs they take.

"You must have ways to link those very different data sets or the whole thing comes crashing down with very little understanding and very little advancement from all this fabulous genetics," said Gilbert S. Omenn, executive vice president for medical affairs at the University of Michigan and CEO of the University of Michigan Health System.

"The information in the aggregate form of patient databases will probably be one of the most powerful tools for the medical industry in the future," said Randy Scott, president and CEO of Incyte Genomics. "Protecting the freedom of the individual" while using that information stored in patient databases for the good of all is the goal "in terms of value for society."

MIT Technology Review Medical Records, Inc.
"The United States’ most famous epidemiological study, the Framingham Heart Study, is about to take a medically promising step that could help in the effort to discover genes responsible for common diseases. But the move is also likely to raise questions about the commercial exploitation of patients’ medical records."

"The demand for so-called “phenotype” data (measurements of an individual’s actual physical characteristics) from well-studied populations like Framingham is rising dramatically thanks to rapid advances in genetic technology. “Genetic analysis can be done with an arbitrarily great degree of precision. But you are limited by patient data,” says Ledley. “This is the missing link.”

"In fact, genomic researchers expect they will eventually need medical data on hundreds of thousands, even millions, of people. For that reason, some European governments with centralized health care systems are now casting hungry eyes on their citizenry’s medical records. The U.K. Medical Research Council, for instance, is planning a massive study involving more than 500,000 volunteers, and scientists have lobbied the U.K.’s National Health Service to create a genetic database encompassing the entire British population. Similar national databases are under consideration in Italy and Estonia."

redux [06.15.00]
New England Journal Of Medicine Rules for Research on Human Genetic Variation -- Lessons from Iceland
"DNA molecules are entirely separate from medical records. In the future, however, the DNA molecule and the medical record are likely to merge into one when it becomes possible to sequence a person's entire genome and put that information on a computer chip or disk. This is not deCODE's current project, but we should not wait until this step is taken to explore its implications. The most important questions would then be who has the authority to make such a disk in the first place; who owns the disk; who controls the use of the disk; and whether the disk containing the genome should be treated as specially protected medical information, as is the case for psychiatric and drug-dependency records? In clinical settings, it seems reasonable to treat such a disk as containing particularly private and sensitive medical information. It also seems reasonable to permit patients to agree to have their entire genome scanned without detailing the tens of thousands of tests that would be run. This is akin to consent to a battery of tests during an annual physical examination.

On the other hand, in a research setting, or when a specific genetic disorder is suspected, the creation and use of an individual patient's genome disk should be subject to the informed consent of the patient. And since they can be both separated from the medical record and readily recreated, research subjects should retain the right to have the files containing their genetic information destroyed at any time.

Iceland's experience with deCODE provides a useful catalyst for formulating fair and ethical rules for research on genetic variation. The Icelandic experience demonstrates that people are concerned about how genetic research is done, that medical-records research and DNA-based research are not the same, that community consultation is necessary but not sufficient to justify DNA-based research ethically, that the probable benefits of such research should be spelled out as clearly as possible, and that international standards for consent to and withdrawal from research should apply directly to research on human genetic variation. Rules for such research will retain their relevance even after it becomes possible to transfer all the genetic-sequence information in a DNA molecule to a computer disk."

redux [02.13.00]
The Daily Davos Beyond the Genome
"By the spring of this year, the first draft of the human genome -- the sequence of all the genetic instructions needed to make up a human being -- will be published on the Web. But that is only the end of the beginning. Scientists still have very little idea of what most of the 100,000 or so human genes actually do, and finding out will take them into a very different area of research.

The raw material of the genome program has been anonymous samples of DNA, manipulated by complex laboratory machines that turn out information like a production line turns out widgets. But the new era of post-genome research involves analysing real people and their confidential medical records. The records are needed to match the genes that people carry with the diseases they may develop. Only then will gigabytes of genetic data into new treatments for cancer or heart disease. And that is why socialised healthcare is a vital part of post-genome research.

Countries such as the U.S., which provide healthcare through private enterprise, are useless for this sort of genetic inquiry. Only those countries which have organized the delivery of healthcare to their population in a way that is independent of the marketplace have built up the universal medical records necessary to make sense of the patterns of disease."

redux [05.26.00]
Yahoo! News Partners HealthCare and DeCODE Genetics Join Forces Against Disease
"Through a better understanding of the genetic components of disease, the alliance aims to pioneer new diagnostic and therapeutic approaches to common illnesses and to develop leading-edge bio- informatics that can improve the quality of healthcare.

The three-year agreement includes research and business collaborations in three distinct areas. First, the alliance will enable Partners and deCODE scientists to form joint research teams to identify and compare disease- causing genes or loci responsible for diseases in both the Icelandic and Massachusetts populations. Second, the two entities will be able to collaborate on basic research related to these new genes and on the discovery of novel approaches to preventing and treating common diseases. Third, deCODE will provide Partners with healthcare informatics systems resulting from deCODE's development of the Icelandic Health Sector Database (IHD). These technologies will strengthen Partners' existing information system infrastructure, enabling a more comprehensive population-based approach for its genetics research and facilitating collaborations between the two parties. deCODE has the right to develop and market products and services resulting from the collaborative research programs."