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{bio,medical} informatics


Monday, October 16, 2000

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find related articles. powered by google. CBC IBM's presence shines spotlight on marriage of genetics and information technology
"When a company as rich and well-known as IBM Corp. gets behind something as cutting-edge as First Genetic Trust, a new repository for all your most personal DNA secrets, it's clear something big is happening.

That something is bioinformatics, the use of computers to sift through the mind-boggling amounts of data collected in the study of genetics."

"In the long run, perhaps 20 years from now, individuals may be able to sit with their doctor, download some of the genetic information over the Internet and use it to select a treatment or drug, Holden says.

But for the next few years, First Genetic will be mainly a buffer between pharmaceutical companies doing genetic research and individuals - guaranteeing to protect the people who have agreed to DNA analysis.

It remains to be seen whether Holden can convince the public of First Genetic's independence. The company's main source of revenues for the foreseeable future will be fees paid by drug companies for access to the information in First Genetic's database."
redux [10.10.00]
find related articles. powered by google. Individual.Com First Genetic Trust to Address Individual Privacy and Security Requirements For Genetic Research and Personalized Care
"A new company, First Genetic Trust, Inc., has been formed to protect the privacy and security of individuals' genetic information, while also supporting the application of such data to advance medical research, diagnosis and treatment."

"Founded by leaders in the fields of pharmacogenetics, bioinformatics, and information systems technology, First Genetic Trust will provide genetic data handling and bioinformatics services to pharmaceutical companies, medical researchers, and health care providers engaged in genetic research. The company also will be a leading on-line portal for genetic information, education and counseling services, to facilitate individuals' decision-making regarding the use of their private genetic information."
find related articles. powered by google. GenomeWeb Leading Researchers Team Up to Form Genetic Bank
"The incentive for patients to open a genetic bank account is not simply a free toaster. As personalized medicine moves from theory to the doctor’s office, First Genetic Trust will " take your information and the information from [a drug response] profile, BLAST the two together and informatically provide that diagnostic back to the provider," said Holden. He noted that initially the data gathered would be used for research purposes only.

The bank account model is an alternative to what Holden called " the ludicrous concept of having this information on a credit card, which they can lose or it can become encrypted."

The business model counts on revenue from pharmaceutical companies, healthcare providers, and, yes—insurance companies."
redux [06.15.00]
find related articles. powered by google. 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]
find related articles. powered by google. 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."


[ rhetoric ]

Bioinformatics will be at the core of biology in the 21st century. In fields ranging from structural biology to genomics to biomedical imaging, ready access to data and analytical tools are fundamentally changing the way investigators in the life sciences conduct research and approach problems. Complex, computationally intensive biological problems are now being addressed and promise to significantly advance our understanding of biology and medicine. No biological discipline will be unaffected by these technological breakthroughs.

BIOINFORMATICS IN THE 21st CENTURY

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