"Though he died 21 years ago, Slavin is worth keeping track of. Not because his cells produced extremely valuable proteins that were important for scientific research. But because Slavin's relationship to those cells was unique: they weren't just part of his body; they were his business, his property. Slavin was one of the first people in history to decide that contrary to the way things usually work in science, he would maintain complete control over any blood and tissues removed from his body. He would determine who used them for research, how and, most important to Slavin, who made money from them.
This may not sound like a particularly groundbreaking idea, unless you consider it with a little-known fact: blood samples and other excised human tissues have an afterlife. When you go to the doctor for a routine blood test or mole removal, when you have an appendectomy, tonsillectomy or any other kind of ectomy, the stuff you leave behind doesn't always get thrown out. Doctors, hospitals and laboratories keep them. Often indefinitely."
Australian IT Genetic data under fire
"RESEARCHERS in Western Australia have created a vast population database containing 17.5 million records of highly sensitive personal information about 3.6 million of the state's residents.
Next, they're planning to build a BioBank - a human genetics database containing the DNA of every consenting adult in the state. That will propel WA into the global bioinformatics research marketplace."
[Democrats Senator Natasha Stott Despoja] said there was great therapeutic potential in the analysis of DNA through databases and BioBanks, but there were also "frightening" privacy and ethical implications."redux [10.19.03]
The Scientist Individuality and Medicine
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"For complex diseases, we are entering the third phase of a multiphase process. The first was the sequencing of the genome; the second, identifying population variation, such as single nucleotide polymorphisms. Phase 3 is epidemiology: connecting genetic variation to future illness. Phase 3 is the biobank era."
"For some, the very concept of Biobanks is flawed. They characterize such projects as a politically motivated wild-goose chase in which inadequate medical records will produce all sorts of spurious leads. "Garbage in, garbage out," they say. However, let's not forget that phases 1 and 2, especially phase 1, took a great deal of criticism and came up trumps. There is a fair chance that phase 3 will do likewise."redux [09.25.03]
BBC Will Biobank pay off?
""I think it's a fantastic idea but people are sceptical that science by committee that is trying to appease so many different groups simultaneously rather than have a more focused approach.""
"There's concern that volunteers will be asked to donate their DNA without really knowing how it's to be used or who's going to use it ."redux [04.29.02]
BBC Millions ploughed into 'gene bank'
"The genetic details of 500,000 people are to be collected and stored in a central UK pool, following the approval of £45m in funding.
It is hoped the pioneering "biobank" scheme will provide valuable information to help fight illness and disease."redux [09.02.00]
NPR : All Things Considered Tissue Banks
"Robert talks with Barry Eisenstein M.D., Vice President of Science and Technology for Beth Israel Deaconess Medical Center, and Professor of Medicine at Harvard Medical School, about his hospital's participation in creating an international tissue bank. They will be asking patients for permission to sell tissue left over from surgery. The tissue will be used by scientists worldwide for genetic research."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 [10.02.00]
British Medical Journal US hospitals to ask patients for right to sell their tissue
"Several academic hospitals in the United States are forming partnerships with biotechnology companies to provide them with human tissue for research, treatment, and drug development purposes, in a series of arrangements which raise wide legal and ethical issues."
"Clearly, a bank of human tissues is needed to enable further research, diagnosis, and therapeutic development. The ability to relate the molecular findings of the human genome project to clinically relevant material and data is dependent on ventures such as those of Ardais and academic centres.
The bioethical questions and repercussions of these partnerships, however, continue to be problematic."redux [05.11.01]
BioMedNet "Failure of integrity" over data protection threatens disease monitoring
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"Guidelines on patient confidentiality could undermine medical research, with lethal consequences, said one of the world's leading epidemiologists today. "By making [patient] records anonymous, so even bona fide medical researchers cannot access them, [the guidelines] will cause many deaths," insisted Richard Peto, co-director of the Clinical Trial Service Unit and Epidemiological Studies Unit at the University of Oxford. "It's not beneficial to anyone.""
"Peto was highlighting concern about the threat to the UK's patient registries, which monitor disease, from heart conditions to cancer. The registries link identifiable data from numerous sources, and feed the information to researchers."
“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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