Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-28T22:47:27.790Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  01 January 2021

Graeme Laurie
Get access Rights & Permissions [Opens in a new window]

Extract

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights (1997), Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 42 , Issue 1 , Spring 2014 , pp. 53 - 63
Copyright
Copyright © American Society of Law, Medicine and Ethics 2014

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Harris, J. Keywood, K., “Ignorance, Information and Autonomy”, Theoretical Medicine 22, no. 5 (2001): 415–436.Google ScholarPubMed
Andorno, R., “The Right Not to Know: An Autonomy-Based Approach”, Journal of Medical Ethics 30, no. 5 (2004): 435–439, at 436–437.CrossRefGoogle ScholarPubMed
Bortolotti, L., “The Relative Importance of Undesirable Truths”, Medicine, Health Care and Philosophy 16, no. 4 (2012): 683–690CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
O'Neill, O., Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002).CrossRefGoogle Scholar
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).Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
See supra note 5.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Benn, S. I., A Theory of Freedom (New York: Cambridge University Press: 1988): at 287.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Parker, M., Ethical Problems and Genetics Practice (Cambridge: Cambridge University Press, 2012): at 14–36.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
See supra note 3.Google Scholar
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.Google Scholar
Id., at 63.Google Scholar
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.CrossRefGoogle Scholar
Parent, W. A., “Privacy, Morality and the Law”, Philosophy and Public Affairs 12, no. 4 (1983): 269–288.Google Scholar
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.CrossRefGoogle Scholar
381 U.S. 479 (1965).Google Scholar
Id.Google Scholar
Roe v. Wade, 410 U.S. 113 (1973).Google Scholar
Planned Parenthood v. Danforth, 428 U.S. 52 (1976).Google Scholar
Gavison, R., “Feminism and the Public/Private Distinction”, Stanford Law Review 45, no. 1 (1992): 1–45, at 31–31 and 34–35.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
(2002) 35 EHRR 1.Google Scholar
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.CrossRefGoogle Scholar
See supra note 13 and Schoeman, F. D., ed., Philosophical Dimensions of Privacy: An Anthology (New York: Cambridge University Press, 1984): at Chapter 1.CrossRefGoogle Scholar
See Parent, , supra note 28, at 344.Google Scholar
Gavison, R., “Privacy and the Limits of Law”, Yale Law Review 89, no. 3 (1980): 421–71, at 427–428.CrossRefGoogle Scholar
See supra note 20.Google Scholar
See supra note 33, at 426.Google Scholar
See supra note 31, Schoeman at 3.Google Scholar
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.Google Scholar
Chadwick, R. Levitt, M., and Shickle, D., eds., The Right to Know and the Right Not to Know (Aldershot: Ashgate Publishing Ltd, 1997).Google Scholar
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.CrossRefGoogle Scholar
Prainsack, B. Buyx, A., “Solidarity in Contemporary Bioethics – Towards a New Approach”, Bioethics 26, no. 7 (2012): 343–350.CrossRefGoogle ScholarPubMed
Discussed further in Mason, J. K. Laurie, G. T., Law and Medical Ethics (Oxford: Oxford University Press, 9th ed., 2013): at Chapter 7.Google Scholar
See supra note 29.Google Scholar
Wilson, J. “To Know or Not to Know? Genetic Ignorance, Autonomy and Paternalism”, Bioethics 19, nos. 5–6 (2005): 492–504.CrossRefGoogle ScholarPubMed
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.Google Scholar
Classically, Tarasoff v. Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14 (Cal. 1976).Google Scholar
661 So. 2d 278 (Fla. 1995).Google Scholar
Id., at 281. See also Schroeder v. Perkel 432 A. 2d. 834 (NJ 1981).Google Scholar
Id., at 282.Google Scholar
Molloy v. Meier, 679 N.W.2d 711 (Minn. 2004).Google Scholar
677 A.2d. 1188 NJ 1996, at 1192–3.Google Scholar
See supra note 49, at 685.Google Scholar
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.CrossRefGoogle Scholar
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.Google Scholar
Bennett, B., “Genetics and the Transformation of the Personal”, Monash University Law Review 35, no. 2 (2009): 296–314.Google Scholar
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.CrossRefGoogle ScholarPubMed
Wolf, S. M. et al.., “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. et al.., Managing Incidental Findings and Research Results in Genomic Research Involving Biobanks and Archived Data Sets, Genetics in Medicine 14, no. 4 (2012): 361–384.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
Widdows, H., The Connected Self: The Ethics and Governance of the Genetic Individual (Cambridge: Cambridge University Press, 2013).Google Scholar
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.Google Scholar
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.CrossRefGoogle Scholar