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] |