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Table 1 Examples of public discourse on ELSI

From: Harm, hype and evidence: ELSI research and policy guidance

  Quote Source
Patents "The AMA [American Medical Association] is opposed to gene patenting because it has the potential to inhibit access to genetic testing for patients and hinder research on genetic disease." American Medical Association website [45]
  "[W]e believe [gene patenting] may potentially...[l]ead to significant limitations in genetic research...[s]tifle the development of innovative tests ... and [c]reate exorbitant licensure costs that will be passed on to the consumer." National Society of Genetic Counselors, 2010 [46]
  "It's wrong to think that something as naturally occurring as DNA can be patented by a single company that limits scientific research and the free exchange of ideas..." Chris Hansen, American Civil Liberties Union staff lawyer, in an interview with the Huffington Post, 2012 [47]
  "You, or someone you love, may die because of a gene patent that should never have been granted in the first place." Michael Crichton, The New York Times, 2007 [48]
Testing anxiety "Gene tests 'create undue stress'" BBC News, 2008 [49]
  "The emotional impact of positive test results can be significant and can cause persistent worry, confusion, anger, depression, and even despair.'' US Secretary's Advisory Committee on Genetic Testing, 2000 [19]
  "Genetic testing can help patients make decisions if the information means something specific, but often, it doesn't. In fact, these journeys often bring intense anxiety due to the uncertainty - what one researcher calls 'toxic knowledge'." Ricki Lewis, Scientific American blog, 2012 [50]
Genetic discrimination "Genetic discrimination affects us all! Who has perfect genes?" Canadian Coalition for Genetic Fairness website [51]
  "Gene testing exposes us all to discrimination" Sydney Morning Herald, 2010 [52]
  "Fear of misuse is already preventing people from undergoing genetic testing and participating in clinical trials that are needed to treat disease." Globe and Mail, 2012 [53]