Autonomy,the Right Not to Know,and the Right to Know Personal Research Results: What Rights are There,and Who Should Decide about Exceptions?

Herring J. Foster C. , Please Dont Tell Me. The Right not to Know, Cambridge Quarterly of Healthcare Ethics 21, no. 1 (2012): 20–29 Juth N. , Genetic Information – Values and Rights: The Morality of Presymptomatic Genetic Testing (Saarbrüucken: Lambert Academic Publishing, 2012): Especially Chapters IV and V Helgesson G. Swartling U. , and Eriksson S. , Limited Relevance of the Right Not to Know – Reflections on a Screening Study, Accountability in Research 14, no. 3 (2007): 197–209.

Swartling U. Eriksson S. Ludvigsson J. , and Helgesson G. , Concern, Pressure and Lack of Knowledge Affect Choice of Not Wanting to Know High-Risk Status, European Journal of Human Genetics 15, no. 5 (2007): 556–562.

See Helgesson , supra note 1, at 200.

See Swartling ., supra note 2 at 559–560.

Eriksson S. Helgesson G. , Keep People Informed or Leave Them Alone? A Suggested Tool for Identifying Research Participants Who Rightly Want Only Limited Information, Journal of Medical Ethics 31, no. 11 (2005): 674–678.

Helgesson G. Dillner J. Carlson J. Bartram C. R. , and Hansson M. G. , Ethical Framework For Previously Collected Biobank Samples, Nature Biotechnology 25, no. 9 (2007): 973–976.

See Juth , supra note 1, chapter IV.

Harris J. Keywood K. , Ignorance, Information and Autonomy, Theoretical Medicine 22, no. 5 (2001): 415–436.

See Juth , supra note 1, chapters IV-V

Chadwick R. Levitt M. , and Shinckle D. , eds., The Right to Know and Right Not to Know (Aldershot: Ashgate Publishing Company, 1997)

Andorno R. , The Right Not to Know: An Autonomy Based Approach, Journal of Medical Ethics 30, no. 5 (2004): 435–440.

Laurie G. , In Defence of Ignorance: Genetic Information and the Right Not to Know, European Journal of Health Law 6, no. 2 (1999): 119–132 Laurie G. , Protecting and Promoting Privacy in an Uncertain World: Further Defences of Ignorance and the Right Not to Know, European Journal of Health Law 7, no. 2 (2000): 185–191.

See Juth , supra note 1, at 305ff; Harris Keywood , supra note 9 Rhodes R. , Genetic Links, Family Ties and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge, Journal of Medicine and Philosophy 23, no. 1 (1998): 10–30.

Mill J. S. , On Liberty (Suffolk: Penguin Books, 1859/1974) Tüannsjöo T. , Coercive Care: The Ethics of Choice in Health and Medicine (New York/London: Routledge, 1999).

See Juth , supra note 1, at 305; Herring Foster , supra note 1.

Takala T. , Genes, Sense and Sensibility: Philosophical Studies on the Ethics of Modern Biotechnologies, Dissertation, Reports from the Department of Philosophy, University of Turku (2000): at 59–60.

See Juth , supra note 1, e.g. at 322–323.

Dworkin G. , The Concept of Autonomy, in Christman J. , ed., The Inner Citadel. Essays on Individual Autonomy (New York/Oxford: Oxford University Press, 1989): at 54–62 Dworkin G. , The Theory and Practice of Autonomy (Cambridge/New York: Cambridge University Press, 1988): at 6 see Juth , supra note 1, at Chapter III.

Beachamp T. L. Childress J. F. , Principles of Biomedical Ethics (New York/Oxford: Oxford University Press, 2001): at 57–58.

Faden R. Beauchamp T. L. , A History and Theory of Informed Consent (New York/Oxford: Oxford University Press; 1986): at 8.

See Harris Keywood , supra note 9, at 420.

Takala T. , Genetic Ignorance and Reasonable Paternalism,? Theoretical Medicine and Bioethics 22 (2001): 485–491.

See Juth , supra note 1, at 310.

See Andorno , supra note 10, at 436.

Eyal N. , s.v., Informed Consent, The Stanford Encyclopedia of Philosophy (fall 2012 edition), Zalta E. N. ed., available at %lt;http://plato.stanford.edu/archives/fall2012/entries/informed-consent/> (last visited January 29, 2014).

See Juth , supra note 1, at 305; Herring Foster , supra note 1; Christenhusz G. M. Devriendt K. , and Dierickx K. , To Tell or Not to Tell? A Systematic Review of Ethical Reflections on Incidental Findings Arising in Genetics Contexts, European Journal of Human Genetics 21, no. 3 (2013): 248–55.

Id. ( Christenhusz ), at 249.

Richardson H. S. Cho M. K. ,‘Secondary Researchers Duties to Return Incidental Findings and Individual Research Results: A Partial-Entrustment Account, Genetics in Medicine 14, no. 4 (2012): 467–472.

Id., at 468.

Id., at 468.

Id., at 469–471.

Wolf S. M. Crock B. N. , and Van Ness B. , Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, Genetics in Medicine 14, no. 4 (2012): 361–384.

See Christenhusz , supra note 24, at 249, 252–253.

Kim S. Y. H. , Evaluation of Capacity to Consent to Treatment and Research (New York/Oxford: Oxford University Press, 2010).