B kahn m j e collins f s genetic discrimination and

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Unformatted text preview: 1, 741–66 (2001). 37. Lynch, H. T. & de la Chapelle, A. Genomic medicine: hereditary colorectal cancer. N. Engl. J. Med. 348, 919–932 (2003). 38. Gardner, M. J. et al. Genome sequence of the human malaria parasite Plasmodium falciparum. Nature 419, 498–511 (2002). 39. Holt, R. A. et al. The genome sequence of the malaria mosquito Anopheles gambiae. Science 298, 129–149 (2002). 40. Anderlik, M. R. & Rothstein, M. A. Privacy and confidentiality of genetic information: What rules for the new science? Annu. Rev. Genom. Hum. Genet. 2, 401–433 (2001). 41. Hudson, K. L., Rothenberg, K. H., Andrews, L. B., Kahn, M. J. E. & Collins, F. S. Genetic discrimination and health-insurance — An urgent need for reform. Science 270, 391–393 (1995). 42. Rothenberg, K. et al. Genetic information and the workplace: Legislative approaches and policy challenges. Science 275, 1755–1757 (1997). 43. Fuller, B. P. et al. Policy forum: Ethics — privacy in genetics research. Science 285, 1359–1361 (1999). 44. Miller, P. S. Is there a pink slip in my genes? J. Health Care Law Policy 3, 225–265 (2000). Acknowledgements The formulation of this vision could not have happened without the thoughtful and dedicated contributions of a large number of people. The authors were greatly assisted by Kathy Hudson, Elke Jordan, Susan Vasquez, Kris Wetterstrand, Darryl Leja and Robert Nussbaum. A subcommittee of the National Advisory Council for Human Genome Research, including Wylie Burke, William Gelbart, Eric Juengst, Maynard Olson, Robert Tepper and David Valle, provided a critical sounding board for draft versions of this document. We also thank Aravinda Chakravarti, Ellen Wright Clayton, Raynard Kington, Eric Lander, Richard Lifton and Sharon Terry for serving as working-group chairs at the meeting in November 2002 that refined this document. Finally, we thank the hundreds of individuals who participated as workshop planners and/or participants during this 18-month process. 847...
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