Genome project to tackle mass screening

Article Abstract:

A pilot project to screen the public for cystic fibrosis (CF, a congenital chronic, severe respiratory disorder) is being planned by branches of the National Institutes of Health (NIH), other government agencies, and the Human Genome Project. The latter group has taken the lead in planning the project. The progress made in identifying the CF gene has not been applied to the area of genetic testing. Denmark and the UK have already started public testing programs, while the US is waiting until related legal and ethical issues are solved. In the US, the CF test is expensive, costing approximately $300 per sample, based on 3,000 tests per year. However, in the UK, where 50,000 samples are processed yearly, the test costs two dollars. The US also suffers from a shortage of genetic counsellors; current estimates put their number at fewer than 1,000. Critics maintain that CF screening is just a method of rationalizing abortion. Some private health insurers who pay for genetic testing do so only if parents promise to abort a fetus with a high probability of developing a serious and expensive disease. Research into ethical concerns, such as discrimination against CF gene carriers, will take up to 4 percent of the project's budget. The CF screening test is not 100 percent effective, detecting a maximum of 90 percent of CF carriers. Nancy Wexler, directors of the genome project's ethics working group, hopes to turn many important questions about screening into research questions. Project members fear that money will shift from basic research to screening programs, slowing their progress. Wexler emphasizes that pilot screening programs would not necessarily effect research, and that funding for the ethics budget would not affect the research budget. (Consumer Summary produced by Reliance Medical Information, Inc.)

United Kingdom, Denmark, Diagnosis, Political aspects, Beliefs, opinions and attitudes, Ethical aspects, Genetic screening, Genetic testing, Cystic fibrosis, Great Britain, Wexler, Nancy S.

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Wall Street remains bearish on value of genome project

Article Abstract:

The Institute for Genomic Science and its affiliate, Human Genome Science Inc, have found few investors willing to back the marketing of diagnostic products based on the sequencing of cDNA. Lingering controversy over the patenting of genomes, poorly developed markets for products and the lack of technological advances are deterring Wall Street investors from putting money into the venture started by former National Institutes of Health (NIH) researcher J. Craig Venter. In addition, presidential science advisor D. Allan Bromley says the US opposes an international ban on the patenting of gene fragments.

Management, Economic aspects, Science and technology policy, Intellectual property, United States. National Institutes of Health, Genomes, Human Genome Sciences Inc., Bromley, D. Allan

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US genome project does it the French way, conceding that size matters after all

Article Abstract:

Plans for a large-scale gene mapping facility in Cambridge, MA, show that the US human genome project is increasingly emphasizing the mapping of the entire genome rather than only portions of it. The new US facility will be partly modeled on France's Genethon, a large gene mapping center located close to Paris. However, the director of the new US center, Eric Lander, will organize the facility more like a university laboratory than like a factory as has Genethon's director, Daniel Cohen. Small-scale genome researchers worry that the large-scale effort will deprive them of a useful role.

Research, Planning, International aspects, Human Genome Project, Chromosome mapping

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