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The
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Who
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Global
Legislation
Global Round Up Berlin, Germany: Calling it “cannibalism”, German officials expressed opposition to a measure passed by the British House of Commons, permitting the cloning of human embryos. Under the new law, British researchers can keep the embryos alive for 14 days to extract stem cells. Human reproductive cloning is still illegal. The officials claim that the law breaks prior ethical understandings prevalent in the European Community. The European Parliament is considering legislation covering stem cell extraction. Jerusalem, Israel: The Knesset has approved a genetic information law to regulate genetic testing. The new law requires prior informed consent and controls access to genetic information.. With fines and imprisonment, sanctions are expected to prevent employment or insurance discrimination. Montgomery County, MD: This suburb of Washington, DC, a center of government and private sector genetic research, as well as a bedroom for the nation’s capital, became the first municipality to ban employment or promotion discrimination based upon an employee’s genetic susceptibility to disease. Information from both blood tests and family histories are covered. London,UK: The Genetics and Insurance Committee of the Health Ministry approved two genetic tests for Huntington’s Disease. The Association of British Insurers says that applicants for life insurance will not be forced to take the tests, but if they do the test result can be used to decide coverage or premium rates. Tests for Alzheimer's Disease and breast cancer may also be submitted for approval. Washington, DC: Peer pressure on genetic researchers to protect research subjects in gene therapy experiments was increased by FDA measures to require submission of protection monitoring plans, and quarterly FDA-NIH meetings for discussion of safety reports. The Biotechnology Industry Association said it supports the initiatives, but critics are skeptical about whether critical information on “adverse events “ would be released, since these may legally be trade secrets, details of which have a competitive value in the highly competitive industry. Greg Koski, Director of the newly upgraded Office for Human Research Protections in the Department of Health and Human Services. praised the American Society of Gene Therapy for setting a new conflict-of-interest standard: researchers should be free of significant financial invol vement with companies who sponsor their research. Osasco, Brazil: Fernanda Giannasi, a labor inspector who co-founded an asbestos victims group here, successfully spearheaded an asbestos ban in this former asbestos manufacturing center near Sao Paulo. European-owned plants closed, leaving former workers in need of medical care and wage replacement. The ban followed an international conference held here in September attended by more than 400 activists from 32 countries, according to Barry Castleman. [More information: www.ibas.btinternet.co.uk]State
Initiatives Who owns genetic information? Over the past year, hundreds of bills have been introduced in state legislatures on genetic information. Little recent action has taken place on this key issue. A National Council of State Legislatures survey shows that the explicit definition of genetic information as personal property is found only in the laws of Colorado [1995], Florida [1998], Georgia [1995], Louisiana [1997], and Oregon [1995]. Cheye Calvo, employment and insurance specialist for NCSL, reports that “ the Oregon property rights provision has received considerable attention for a number of reasons. First, the law grants property rights not only to genetic information, but DNA samples. This goes beyond the laws in Colorado, which actually passed the year before Oregon’s law in 1995, and serves as the model for Georgia and,” he believes, “Florida and Louisiana as well.” “Additionally,” Calvo points out, “the Oregon law explicitly addresses the matter of destruction of DNA samples after use for a specific project for which informed consent has been provided. Finally, the strong biomedicine and biotech community has focused considerable attention on the law. The law passed in 1995 without much input from the pharmaceutical and biotech communities, but they caught on in 1996 when New Jersey’s legislature passed a similar measure. Industry groups successfully lobbied Governor Whitman to veto the measure, and the provision was removed before the full genetics bill was enacted. In Oregon, industry groups successfully lobbied for revisions to the law in 1997, but efforts in 1999 to actually remove the property right provision passed the Senate, but failed in the House. The legislature has established an interim committee to look at the issue and recommend action for next year.” Calvo noted that Oregon’s legislature only meets on odd years.
More information on state legislation is available on the NCSL web
site: http://www.ncsl.org/programs/employ/genetics.htm.
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