Human genetics commission launches consultation on the future of genetic information.
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Massive and systematic information on human genes and genome is accumulating with progress in the Human Genome Project. Information on the genome has a characteristic digital signal that is appropriate for high-throughput handling by computers. Therefore, the field of gene tests has a high affinity to the field of laboratory medicine. In addition, it is a important survival strategy for departments of laboratory medicine to remain at the cutting edge. We must establish an infrastructure for utilizing genome information in clinical medicine and must anticipate numerous issues. The following issues need to be addressed. 1. Online database of human gene tests (http://www.kuhp.kyoto-u.ac.jp/idennet/DB/index2.html) 2. Anonymous handling of patients' samples 3. Establishment of independent Department of Clinical Genetics 4. Education of clinical geneticists 5. Quality control of human gene tests (especially germline mutation tests) 6. Education of technicians handling human gene tests.
As the Human Genome Project increases the predictive power of human genetics, emerging gene chip technology and other advances of genetic testing will give more information to people about their genetic predilections. If insurance companies were allowed to use this information, they would set premiums such that many who need life-saving medical treatment would have no access to it. Americans would not accept this disparity; instead, genetic information will likely remain private, making the modern health insurance system unprofitable for companies and thus pushing the United States towards a universal health care system in the near future.
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Moral failing is usually construed as a personal flaw, but there is another construction: where morals fail people, where our moral precepts are silent. The author of this article argues that this happens nowadays where technological advances, such as genetic engineering in medicine, raise moral questions but get legal answers. By responding to the legal issues involved, the moral questions are pre-empted. This results in answers drawn from legal categories, often with commercial perspectives, but misses the larger moral dilemma.
The human genome project has led to impressive scientific advances in understanding the genetic basis of disease. To date, genetic risks associated with occupational illnesses are not well understood. Recent research, however, has uncovered an allele that appears directly related to the risk of contracting chronic beryllium disease; other chromosomal abnormalities have been identified in association with cancer. Progress from the human genome project has potential implications for predicting, screening, and diagnosing occupational diseases. Ethical issues associated with the use of genetic testing in the workplace will present employers, insurers, and physicians with challenging decisions related to promoting health in the workplace while avoiding potential misuse of sensitive genetic information.
This article describes a nationwide empirical study that will be undertaken during the next three years into the newly emerging phenomenon of genetic discrimination. In particular, the study aims to investigate the nature and extent of genetic discrimination in Australia across three key perspectives: consumers, third parties and the legal system. Further, the study aims to examine the social and legal implications of genetic discrimination, with a view to making recommendations for use in the Australian legal and policy context. It is anticipated that the data produced from this multifaceted investigation will assist in identifying areas where legal or other reforms are required. It will contribute significant baseline data for facilitating ongoing assessment of the nature and extent of the problem, as well as for longitudinal evaluation of the impact and effectiveness of any reforms which may be introduced in the future to address the issue.