Genetic screening: law to keep labels off genes

Article Abstract:

In mid-September 1990, Congressman John Conyers of Michigan introduced a bill which would protect the individual's right to privacy about his or her own genetic information. Much of the concern stems from the possibility that detection of an abnormality on a genetic test might result in discrimination against the individual. Such discrimination has already occurred in some cases. People carrying a single copy of the sickle-cell anemia gene have been refused employment based on the mistaken belief that they are susceptible to the disease. Similar discrimination has occurred against individuals carrying the gene for Gaucher disease, a disorder of lipid metabolism. There is a very real concern that the public, and the people who are making employment decisions, are not able to properly evaluate genetic information. Persons without medical training may fail to realize that some genetic defects are not particularly severe, and that if an individual has such an abnormality it has no real relevance to decisions about employment, insurance, or adoption. Debate on the bill introduced by Conyers will begin in the Spring of 1991. (Consumer Summary produced by Reliance Medical Information, Inc.)

Social aspects, Laws, regulations and rules, Human Genome Project, Genetic disorders, Employment discrimination

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Orphan drug act: winners to keep all

Article Abstract:

Orphan drugs are drugs that are likely to help only rare diseases, and there have traditionally been no firms willing to produce them. The Orphan Drug Act was passed in 1983 to provide research support to help companies develop drugs for diseases which affect fewer than 200,000 people. The Act also provided for tax credits and a seven-year marketing monopoly when the drugs are introduced to the market. However, some feel that companies have abused the privilege and maintain excessive prices, while enjoying a government-sanctioned monopoly. Examples most often cited are genetically engineered drugs, such as growth hormone and erythropoietin, which are very expensive. A Congressional committee has now passed a revision which would permit the present monopolies to continue, but would stop companies from monopolizing potentially profitable orphan drugs. However, the revision exempts the same drugs whose exorbitant prices prompted new legislation in the first place. Some supporters of the amendment, which includes the National Organization of Rare Diseases, believe that the most important issues have been side-stepped. (Consumer Summary produced by Reliance Medical Information, Inc.)

Economic aspects, Pharmaceutical industry, Political aspects, Orphan drugs

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Genetic screening for cystic fibrosis

Article Abstract:

The use of genetic screening to locate carriers of the cystic fibrosis (CF) gene moved closer to reality when a two-year study of the Celtic people of western Brittany in France found 98% of all CF mutations. Claude Ferec and colleagues used a form of genetic screening called denaturing gradient gel electrophoresis to test for the CF transmembrane regulator gene that causes this severe form of lung disease. However, whether this testing method will succeed in a less homogeneous population is uncertain. Moreover, counselling and education will be essential to any screening program for CF.

Health aspects, Research, Testing, Genetic aspects, Mutation (Biology), Mutation, Cystic fibrosis, Brittany

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