Resources

The following list of online resources includes organizations with a variety of interests and perspectives related to genetic discrimination and genetics. The Human Genome Project site offers information about genetic engineering that can be understood by non-experts. The Council for Responsible Genetics considers the impacts of biotechnology from a public interest perspective, including a section on genetic discrimination, and the Biotechnology Industry Organization (BIO) officially represents the biotech industry and its constituent companies.

The National Human Genome Research Institute has a page concerning genetic discrimination in health insurance and what legislative protections are in place to combat this practice. http://www.genome.gov/10002328.

The Council for Responsible Genetics is a non-profit organization dedicated to distributing information about biotechnology. The website includes the online magazine Genewatch, which is dedicated to monitoring the social, ethical and environmental consequences of biotechnology, as well as an entire section focusing on genetic discrimination, testing, and privacy. This site is available at: http://www.gene-watch.org/programs/privacy.html.

The Human Genome Project has a gene therapy page that offers the interested non-scientist information about gene therapy. The site contains a section on ethics and is available at: http://www.ornl.gov/sci/techresources/Human_Genome/ medicine/genetherapy.shtml.

The Center for Genetics and Society has a website with a section on policies, perspectives, news articles, and information on germ line intervention technologies. The site is available at: http://www.genetics-and-society.org/index.asp.

The American Journal of Bioethics website provides journal articles and resources on bioethics, including germ line intervention. It includes weekly news updates, editorials, and featured target articles. This site is available at: http://bioethics.net.

The Genetic Discrimination Project is a site dedicated to a recent empirical study of genetic discrimination in Australia. It is available at: http://www.gdproject.org/.

Genetic Alliance is a nationwide resource network for information on single gene disorders for health care providers and families. This page contains information on federal legislation, insurance, and employment resources. The site can be accessed at: http://www.geneticalliance.org/ws_display.asp?filter=policy_discrimination.

The International Centre for Genetic Engineering and Biotechnology (ICGEB) is an organization dedicated to research and training in molecular biology and biotechnology. The ICGEB is a key resource for technical information, including research and training sources. This site is available at: http://www.icgeb.trieste.it.

The Biotechnology Industry Organization (BIO) represents biotechnology companies, academic institutions, state biotechnology centers, and related organizations in the United States and numerous other countries. BIO has developed a resource entitled Oversight of Gene Therapy: A Position Paper of the Biotechnology Industry Organization, which is available at: http://www.bio.org/issues/genetherapy_120799.html.

Gene Watch is a nonprofit group in the United Kingdom that monitors genetic technology, with special focus on the public interest aspects. The site is available at: http://www.genewatch.org.

The Cold Spring Harbor Laboratory (www.cshl.org) conducts research in cancer, genomics, plant genetics, and neurobiology. The website includes the Dolan DNA Learning Center site, which is a resource for educational information about DNA and is available at: http://www.dnalc.org.

Ifgene was formed to promote a deeper dialogue about genetic engineering by giving special attention to how people approach science and the moral and spiritual implications of genetic engineering. The website includes articles, book reviews, and useful links and is available at: http://www.anth.org/ifgene.

The website for Global Lawyers and Physicians for Human Rights provides information on national and international legislation regarding human cloning and germ line intervention. This site has a clickable ³genetics database map² which allows the user to click on regions of the world and get information about policies and resources in that area relating to cloning and germ line intervention. The site is available at: http://www.glphr.org/genetic/genetic.htm.

The Disabled Peoples International (DPI) Position Statement on Bioethics and Human Rights offers statements on the potential implications of genetic interventions to the disabled community. The Position Statement is available at: http://www.dpieurope.org/htm/bioethics/dpsngfullreport.htm.

Human Genetics Alert, a public interest group based in London, has a number of position papers, press releases, and cartoons dedicated to the implications of biotechnology, including germ line intervention. The website is available at: http://www.hgalert.org.