Dealing with the data

Article Abstract:

A task-force recently met in an attempt to formulate a national policy on how data generated by research on the human genome should be handled. The human genome refers to the complete human genetic profile composed of one complete set of chromosomes. A great deal of work is currently being done in mapping and sequencing genomes in an effort to identify specific genes and to understand the patterns and sequences which create the chromosome structures. Present at this meeting were representatives from Genbank, the national sequence database, the National Institutes of Health (NIH), and the Department of Energy (DOE). A debate regarding the proper dissemination of new genetic sequencing data and, in particular, the question of when the data should be released and what role journals should play in this process was discussed. Data is currently extracted from journals and entered into central data banks to make the information available to the public for research purposes. It has been suggested that journals, prior to giving publication approval, should request authors to input their results into a central data bank to ensure that the new sequencing information is quickly and readily available to anyone who may need it. Some have argued that researchers should have the opportunity to refine their results prior to public release. It has also been suggested that restriction of data to gain potential commercial profits may stifle reciprocity. The imposition of conditions for publication and for grant funding were discussed, as well as possible incentives for research. A system to regulate what information should go into these genetic data banks, who is to be responsible for the deposit, and when this should be done, still requires a good deal of clarification.

Research, Genomes, Genetic research

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Public debates on ethics

Article Abstract:

The human genome initiative is a major research effort to analyze the sequence of the entire complement of human genetic material (DNA, deoxyribonucleic acid). Laboratories at universities and medical centers throughout the United States are cooperating; each laboratory will analyze a part of the human genome and the results will eventually be integrated. The initial goal is to develop the techniques to detect genetic diseases, but as research continues scientists expect to develop cures for them. While curing diseases is considered a worthwhile and harmless goal by most people, complete knowledge of human DNA could also be used for less altruistic purposes. For example, some fear that individuals will be tested for genetic diseases and test results will be used in decisions about employment and health insurance. The human genome advisory committee has recommended that town meetings be held throughout the United States to give the public an opportunity to learn about and react to the human genome initiative. Ethical, social and legal issues should be addressed, and procedures for preventing problems developed before the scientific results are obtained. The committee reported that the annual budget of the massive research project must be doubled, to $200 million, if it is to be finished in 15 years as planned.

Social aspects, Ethical aspects, Genetic engineering

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CF screening premature?

Article Abstract:

Cystic fibrosis (CF) is an inherited disease involving production of thick mucus that obstructs the lungs, pancreas, and intestinal glands. Respiratory infections are common and can be severe. The American Society for Human Genetics (ASHG) recently urged that screening tests for the genetic defect linked to CF not be offered to all couples planning to have a baby. Only parents known to be at risk because a close relative has CF should be screened. Until recently, the test was technically limited to only these individuals, and only if a relative with CF was still living. But the new test could be applied to the general population. Its accuracy is limited, however, because it only identifies 70 percent of CF carriers. The other 30 percent have different mutations that also cause CF. The ASHG has stated that general screening should be delayed until the test is more accurate and counselling services are developed to help couples understand the test result. One manufacturer of the new CF test will refuse to provide the test to persons who have no family history of CF; another manufacturer will provide it, although they will advise against it if no family members have the disease.

Evaluation, Testing, Cystic fibrosis

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