Hostname: page-component-586b7cd67f-t7czq Total loading time: 0 Render date: 2024-11-28T20:06:24.275Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  01 January 2021

Gert Helgesson
Get access Rights & Permissions [Opens in a new window]

Extract

Bioethicists have for quite some time discussed the right to know and the right not to know personal health information, such as genetic information acquired in health care and incidental health-related findings in research. Several international ethical guidelines explicitly defend these rights.

My own interest in these matters stems from my participation in ethics-related research tied to a longitudinal screening study on Type I diabetes involving young children. A few of the participating parents (about 2 percent) did not want to be informed if the study revealed their child had a high risk of developing diabetes. This response was troublesome, not least since the information would concern the child's and not the parents’ health. Our inclination was that there cannot be a right not to know that should be granted without qualifications. Furthermore, other contextual factors, e.g., that parents experienced pressure to participate and felt concern about some of the personal data handled in the study, gave reason to question whether autonomous decisions were made regarding participation. The autonomy of their expressed desire not to know was therefore questionable.

Type
Symposium
Information
Journal of Law, Medicine & Ethics , Volume 42 , Issue 1 , Spring 2014 , pp. 28 - 37
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

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.CrossRefGoogle 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.CrossRefGoogle Scholar
See Helgesson, et al., supra note 1, at 200.Google Scholar
See Swartling, et al.., supra note 2 at 559–560.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
See Juth, , supra note 1, chapter IV.Google Scholar
Harris, J. Keywood, K., “Ignorance, Information and Autonomy”, Theoretical Medicine 22, no. 5 (2001): 415–436.Google ScholarPubMed
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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).Google Scholar
See Juth, , supra note 1, at 305; Herring, Foster, , supra note 1.Google Scholar
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.Google Scholar
See Juth, , supra note 1, e.g. at 322–323.Google Scholar
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.Google Scholar
Beachamp, T. L. Childress, J. F., Principles of Biomedical Ethics (New York/Oxford: Oxford University Press, 2001): at 57–58.Google Scholar
Faden, R. Beauchamp, T. L., A History and Theory of Informed Consent (New York/Oxford: Oxford University Press; 1986): at 8.Google Scholar
See Harris, Keywood, , supra note 9, at 420.Google Scholar
Takala, T., “Genetic Ignorance and Reasonable Paternalism,?”, Theoretical Medicine and Bioethics 22 (2001): 485–491.CrossRefGoogle Scholar
See Juth, , supra note 1, at 310.Google Scholar
See Andorno, , supra note 10, at 436.Google Scholar
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).+(last+visited+January+29,+2014).>Google Scholar
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.Google Scholar
Id. (Christenhusz, et al.), at 249.Google Scholar
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.CrossRefGoogle ScholarPubMed
Id., at 468.Google Scholar
Id., at 468.Google Scholar
Id., at 469–471.Google Scholar
Wolf, S. M. Crock, B. N., and Van Ness, B. 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
See Christenhusz, et al., supra note 24, at 249, 252–253.Google Scholar
Kim, S. Y. H., Evaluation of Capacity to Consent to Treatment and Research (New York/Oxford: Oxford University Press, 2010).Google Scholar