Table 1 Examples of public discourse on ELSI

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]