Defining the Scope of Public Engagement: Examining the “Right Not to Know” in Public Health Genomics

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See, for example, the adult carrier screening program run by the Health and Social Services Agency of Saguenay-Lac Saint Jean in Quebec, Canada, initiated in 2010. This program screens those at risk for Autosomal recessive spastic ataxia of Charlevoix-Saguenay; Leigh Syndrome, French-Canadian type; Tyrosinemia Type I; and Agenesis of the Corpus Callosum with Peripheral Neuropathy in order to provide reproductive decision-making information. See <http://www.santesaglac.gouv.qc.ca/index.html> for more information.

See Andorno , supra note 2.

See Brand , supra note 11.

See Cleeren , supra note 12.

See Massée , supra note 4.

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See Boyce Borry , supra note 6.

See Brand , supra note 11.

See Cleeren , supra note 12.

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Committee on Bioethics, Committee on Genetics, The American College of Medical Genetics, Genomics, Social Ethical Legal Issues Committee, Ethical Issues in Genetic Testing and Screening of Children, Pediatrics 131, no. 3 (2013): 620–622 Pollitt R. J. Introducing New Screens: Why Are We All Doing Different Things? Journal of Inherited Metabolic Disease 30, no. 4 (2007): 423–429 Ross L. F. , Technical Report: Ethical and Policy Issues in Genetic Testing and Screening Children, Genetics in Medicine 15, no. 3 (2013): 234–245.

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See Bayer Fairchild , supra note 1; Howard H. C. , The Ethical Introduction of Genome Based Information and Technologies into Public Health, Public Health Genomics (2013).

See Bredenoord , supra note 50.

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See Avard , supra note 3.