Recognizing the Right Not to Know: Conceptual,Professional,and Legal Implications

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

Andorno R. , The Right Not to Know: An Autonomy-Based Approach, Journal of Medical Ethics 30, no. 5 (2004): 435–439, at 436–437.

Bortolotti L. , The Relative Importance of Undesirable Truths, Medicine, Health Care and Philosophy 16, no. 4 (2012): 683–690

also Bortolotti L. Widdows H. , The Right Not to Know: The Case of Psychiatric Disorders, Journal of Medical Ethics 37, no. 11 (2011): 673–676. Krajewska A. , Conceptual Quandries about Genetic Data – A Comparative Perspective, European Journal of Health Law 16, no. 1 (2009): 7–26.

O'Neill O. , Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002).

Seminal texts include Faden R. R. Beauchamp T. L. , A History and Theory of Informed Consent (New York: Oxford University Press, 1986) and McLean S. A. M. , The Patients Right to Know: Information Disclosure and the Law (Aldershot: Ashgate Publishing Ltd, 1987).

Laurie G. , Reflexive Governance in Biobanking: On the Value of Policy Led Approaches and the Need to Recognise the Limits of Law, Human Genetics 130, no. 3 (2011): 347–356.

Compare Siminoff L. A. Agyemang A. A. , and Traino H. M. , Consent to Organ Donation: A Review, Progress in Transplantation 23, no. 1 (2013): 99–104, and Truog R. D. , Consent for Organ Donation – Balancing Conflicting Ethical Obligations, New England Journal of Medicine 358, no. 12 (2008): 1209–1211.

Laurie G. Sethi N. , Towards Principles-Based Approaches to Governance of Health-Related Research Using Personal Data, European Journal of Risk Regulation 4, no. 1 (2013): 43–57.

See supra note 5.

Dunn N. F. Miller R. Griffioen A. , and Lee C. A. , Carrier Testing in Haemophilia A and B: Adult Carriers and Their Partners Experiences and Their Views on the Testing of Young Females, Hamophilia 14, no. 3 (2008): 584–592 and Asscher E. Koops B. J. , The Right Not to Know and Preimplantation Genetic Diagnosis for Huntingtons Disease, Journal of Medical Ethics 36, no. 1 (2010): 30–33.

Ngwena C. Chadwick R. , Genetic Diagnostic Information and the Duty of Confidentiality: Ethics and Law, Medical Law International 1, no. 1 (1993): 73–95, at 77.

Benn S. I. , A Theory of Freedom (New York: Cambridge University Press: 1988): at 287.

Wertz D. C. Fletcher J. C. , Privacy and Disclosure in Medical Genetics in an Ethics of Care, Bioethics 5, no. 3 (1991): 212–232, at 221.

Parker M. , Ethical Problems and Genetics Practice (Cambridge: Cambridge University Press, 2012): at 14–36.

Davey A. Newson A. , and O'Leary P. , Communication of Genetic Information within Families: The Case for Family Comity, Bioethical Inquiry 3, no. 3 (2006): 161–166 at 164.

See supra note 3.

Husted J. , Autonomy and the Right Not to Know, in Chadwick R. Levitt M. , and Shickle D. , eds., The Right to Know and the Right Not to Know (Aldershot: Ashgate Publishing Ltd, 1997): 55–68, at 61–62.

Id., at 63.

Laurie G. , Genetic Privacy: A Challenge to Medico-Legal Norms (Cambridge: Cambridge University Press, 2002) 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 and cf, Bottis Cannelopoulou M. , Comment on a View Favouring Ignorance of Genetic Information: Confidentiality, Autonomy, Beneficence, and the Right Not to Know, European Journal of Health Law 7, no. 2 (2000): 173–183.

Parent W. A. , Privacy, Morality and the Law, Philosophy and Public Affairs 12, no. 4 (1983): 269–288.

MacDougall R. , Rethinking the ‘Right Not to Know, Monash Bioethics Review 23, no. 1 (2004): 22–36 and Herring J. Foster C. , Please Dont Tell Me: The Right Not to Know, Cambridge Quarterly of Healthcare Ethics 21, no. 1 (2012): 20–29.

381 U.S. 479 (1965).

Id.

Roe v. Wade, 410 U.S. 113 (1973).

Planned Parenthood v. Danforth, 428 U.S. 52 (1976).

Gavison R. , Feminism and the Public/Private Distinction, Stanford Law Review 45, no. 1 (1992): 1–45, at 31–31 and 34–35.

Henkin L. , Privacy and Autonomy, Columbia Law Review 74, no. 8 (1974): 1410–1433 and Parent W. A. , Recent Work on the Concept of Privacy, American Philosophical Quarterly 20, no. 4 (1983): 341–255, at 351.

(2002) 35 EHRR 1.

Boussard H. , Individual Human Rights in Genetic Research: Blurring the Line between Collective and Individual Interests, in Murphy T. , ed., New Technologies and Human Rights (Oxford: Oxford University Press, 2009): 246–271.

See supra note 13 and Schoeman F. D. , ed., Philosophical Dimensions of Privacy: An Anthology (New York: Cambridge University Press, 1984): at Chapter 1.

See Parent , supra note 28, at 344.

Gavison R. , Privacy and the Limits of Law, Yale Law Review 89, no. 3 (1980): 421–71, at 427–428.

See supra note 20.

See supra note 33, at 426.

See supra note 31, Schoeman at 3.

Classically, see Goffman E. , The Presentation of Self in Everyday Life (United States: Anchor Books, 1959) and Murphy R. F. , Social Distance and the Veil, American Anthropologist 66, no. 6 (1964): 1257–1274.

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

Knoppers B. M. Chadwick R. , Human Genetic Research: Emerging Trends in Ethics, Journal of Lifelong Learning in Psychiatry 4, no. 3(2006): 416–422, at 418.

Prainsack B. Buyx A. , Solidarity in Contemporary Bioethics – Towards a New Approach, Bioethics 26, no. 7 (2012): 343–350.

Discussed further in Mason J. K. Laurie G. T. , Law and Medical Ethics (Oxford: Oxford University Press, 9th ed., 2013): at Chapter 7.

See supra note 29.

Wilson J. To Know or Not to Know? Genetic Ignorance, Autonomy and Paternalism, Bioethics 19, nos. 5–6 (2005): 492–504.

Nycum G. Knoppers B. M. , and Avard D. , Intra-Familial Obligations to Communicate Genetic Risk Information: What Foundations? What Forms? McGill Journal of Law and Health 3, no. 1 (2009): 21–48, at 42–45.

Classically, Tarasoff v. Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14 (Cal. 1976).

661 So. 2d 278 (Fla. 1995).

Id., at 281. See also Schroeder v. Perkel 432 A. 2d. 834 (NJ 1981).

Id., at 282.

Molloy v. Meier, 679 N.W.2d 711 (Minn. 2004).

677 A.2d. 1188 NJ 1996, at 1192–3.

See supra note 49, at 685.

American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, ASHG STATEMENT: Professional Disclosure of Familial Genetic Information, American Journal of Human Genetics 62, no. 2 (1998): 474–483.

Kovalesky M. L. , To Disclose or Not to Disclose: Determining the Scope and Exercise of a Physicians Duty to Warn Third Parties of Genetically Transmittable Conditions, University of Cincinnati Law Review 76, no. 3 (2008): 1019–1041.

Bennett B. , Genetics and the Transformation of the Personal, Monash University Law Review 35, no. 2 (2009): 296–314.

See Lunshof J. E. Chadwick R. Vorhaus D. B. , and Church G. M. , From Genetic Privacy to Open Consent, Nature Review Genetics 9, no. 5 (2008): 406–411, at 408.

Wolf S. M. ., Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations, Journal of Law, Medicine & Ethics 36, no. 2 (2008): 219–248 and Wolf S. M. ., Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, Genetics in Medicine 14, no. 4 (2012): 361–384.

Knoppers B. M. Joly Y. Simard J. , and Durocher F. , The Emergence of an Ethical Duty to Disclose Genetic Research Results: International Perspectives, European Journal of Human Genetics 14, no. 11 (2006): 1170–1178.

Miller F. A. Christensen R. Giacomini M. , and Robert J. S. , Duty to Disclose What? Querying the Putative Obligation to Return Research Results to Participants, Journal of Medical Ethics 34, no. 3 (2008): 201–213.

Christenhusz MG 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): 248–255.

Irick M. D. , Age of an Information Revolution: The Direct-to-Consumer Genetic Testing Industry and the Need for a Holistic Regulatory Approach, San Diego Law Review 49, no. 1 (2012): 279–340.

Widdows H. , The Connected Self: The Ethics and Governance of the Genetic Individual (Cambridge: Cambridge University Press, 2013).

Gilbar R. , The Status of the Family in Law and Bioethics (Hampshire: Ashgate Publishing, 2005): at 65 and Woodage T. , Relative Futility: Limits to Genetic Privacy Protection Because of the Inability to Prevent Disclosure of Genetic Information by Relatives, Minnesota Law Review 95, no. 2 (2010): 682–713, at 710.

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 and Peppet S. R. , Unraveling Privacy: The Personal Prospectus and the Threat of a Full-Disclosure Future, Northwestern University Law Review 105, no. 3 (2011): 1153–1204.