The Ramazzini Institute
for Occupational and Environmental Health Research   

Who Are We?

News from Europe

      Contributing Editor Marja Sorsa is directly involved in developing a common directive on genetic testing in the workplace for the 15 European states. She reports that no legislation has yet taken place in the European Parliament, but that action is gradually taking place. Several countries have enacted their own laws, or laws which are moving toward passage, which is the case for Finland.

      Dr. Sorsa notes that the Council of Europe’s Bioconvention, which binds the countries which have ratified it, prohibits discrimination on the basis of genetic characteristics and allows genetic testing solely for health purposes. This limits the use of genetic tests in the workplace.

      A policy on the ethical use of stem cells in research and application is also being developed.

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.

Federal Legislation

      As this issue of GEE! goes “to press”, the Congress of the United States is in an extraordinary session complicated by approaching national elections. Republican leaders feel confident that some legislation will pass, but the Democrats say that they will support only what they consider to be effective measures. The special initiative on genetic discrimination and associated measures in the proposed  “Patient’s Bill of Rights”, the basket in which the Administration has placed most of their hopes, will be summarized in the next edition of the Journal.

     The Amarillo Health Project section reports on the need for the promised critical legislation to provide replacement wages and compensation for workers made ill at the nation’s nuclear weapons facilities. Similar laws have already passed for uranium miners and members of the armed forces who participated in atomic bomb tests.

      The failure of state workers’ compensation systems to aid these workers with replacement wages and medical assistance is seen by organized labor and the Administration as the primary reason why federal legislation is necessary. The facilities are owned by the Department of Energy and mostly operated under contract with universities or major corporations. Collective bargaining agreements with unions exist at all the facilities.

     Workers, like Pete Lopez, a 28 year veteran of DOE’s Pantex Plant who testified before the House Armed Services Committee on September 21, all related the same story of abuse by the “system.” Well-documented workers’ compensation claims for disease associated with occupational exposure are being denied by the state systems.