Thursday, December 14, 2000

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Wired News Estonia to Open Gene Bank
"The Estonian parliament Wednesday passed a law allowing the creation of a nationwide gene bank that scientists say will be the world's biggest -- and a treasure trove for genetics-based health research.

The lawmakers adopted the Human Genes Research Act -- which puts tiny Estonia at the forefront of a global ethical and legal debate on the use of genetic material -- by a vote of 42-3 with one abstention."

"The act limits the use of the gene bank's data to scientific research sanctioned by a new nonprofit foundation, which will be established in the next few months, and imposes jail sentences for the misuse of genetic information.

The law requires that participation by gene donors must be voluntary and their identity kept secret. It forbids employers and insurance companies to collect genetic data on clients or workers, and it bans the use of the data as evidence in law courts."

redux [11.24.00]
BBC Company acquires island gene pool
"A biotechnology company has acquired the exclusive rights to research the genetic make-up of people living on the South Pacific island of Tonga.

Researchers at Melbourne-based Autogen want to study the remote community to trace the genes that cause particular diseases."

"The biotechnology wing of the Australian company will take DNA and blood samples from among Tonga's 108,000 inhabitants.

"It is not known how much, if anything, Autogen has paid the authorities in Tonga for the right to carry out the tests."

Medscape The Icelandic Healthcare Database: A Tool to Create Knowledge, A Social Debate, and a Bioethical and Privacy Challenge
[requires 'free' registration]
"Should genetic material be collected from individuals for the purpose of studying human disease in specific populations? The native genome of Iceland offers a powerful and rare resource in genomic research -- a relatively homogeneous population. In this setting, the proposed Icelandic Healthcare Database, which would integrate medical information with genealogy and molecular genetic data, has driven a number of issues -- both ethical and scientific -- to the fore."

redux [09.22.00]
Individual.Com Geneticists discuss Estonia's ambitious gene bank plan
"Leading geneticists scrutinized plans for a national gene bank Thursday, with advocates saying it could dramatically improve understanding of diseases and critics saying it's a waste of money in a country still struggling with basic health needs.

The government in this former Soviet republic recently OK'd the dlrs 200 million proposal to digitally store the genetic codes of at least two-thirds of the 1.4 million population and sent it to parliament, where it's expected to win easy approval."

""Estonia can be a follower of knowledge in the world or it can a leader,'' said Jaanus Pikani, chairman of the Genome Foundation, which drafted the project. "I want it to be one of the leaders.''"

The Star [Malaysia] DNA database for Sarawak groups
"KUCHING: The Chemistry Department will complete building the DNA (deoxyribonucleic acid) database for the Iban, Bidayuh and Melanau communities in Sarawak by December or early next year, said Science, Technology and Environment Minister Datuk Law Hieng Ding.

He said a similar database for Sarawak's other minority sub-groups, like the Penans, Kayans and Bisaya, would be established next year.

The department relies on hospitals for the supply of blood from the various ethnic groups to build up the DNA database.”

"Law said the first to be established were the DNA database for the Malay, Chinese and Indian communities in the peninsula, which could also be used for Sabah and Sarawak.

Taib said the state government would set up a research council next year to coordinate research actitivities in the state."

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 [04.04.00]
Science When an Entire Country Is a Cohort
[summary - can be viewed for free once registered]
"Denmark has gathered more data on its citizens than any other country. Now scientists are pushing to make this vast array of statistics even more useful by easing restrictions on the use of data coded by personal identification numbers. But government officials are reluctant to do so, citing privacy concerns."

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 [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."