ﺟﻮﻻﻳﻲ، ﺳﻮداﺑﻪ، «منشور حقوق بیماران و راهکارهای ارتقای آن در ایران»، مجله علمی پژوهشی حقوق پزشکی، سال دوم شمارۀ 6، (1387).
References
Articles:
Andorno, Roberto, “The Right Not to Know: An Autonomy Based Approach,” Journal of Medical Ethics, Vol. 30, Issue 5 (2004): 435–39.
Andorno, Roberto. “The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law,” Journal of International Biotechnology Law, Vol. 2, Issue 4 (2006): 133–43.
Asscher, E.; Koops, B. J., “The Right Not to Know and Preimplantation Genetic Diagnosis for Huntington’s Disease,” Journal of Medical Ethics, Vol. 36, Issue 1 (2010): 30–33.
Austad, T., “Medical Ethics: The Right Not to Know—Worthy of Preservation Any Longer? An Ethical Perspective,” Clinical Genetics, Vol. 50, Issue 2 (1996): 85–88.
Barclay, Lizabeth A.; Markel, Karen S., “Discrimination and Stigmatization in Work Organizations: A Multiple Level Framework for Research on Genetic Testing,” Human Relations, Vol. 60, Issue 6 (2007): 953–80.
Beauchamp, Tom; Childress, James, “Principles of Biomedical Ethics: Marking Its Fortieth Anniversary,” American Journal of Bioethics, Vol. 19, Issue 11 (2019): 9–12.
Berkman, Benjamin E.; Hull, Sara Chandros; Biesecker, Leslie G., “Scrutinizing the Right Not to Know,” American Journal of Bioethics, Vol. 15, Issue 7 (2015): 17–19.
Berkman, Benjamin E., “Refuting the Right Not to Know,” Journal of Health Care Law & Policy, Vol. 19, Issue 1 (2016).
Blauwhoff, Richard J., “Tracing Down the Historical Development of the Legal Concept of the Right to Know One’s Origins Has ‘To Know or Not to Know’ Ever Been the Legal Question?” Utrecht Law Review, Vol. 4, Issue 2 (2008): 116.
Borry, Pascal; Shabani, Mahsa; Howard, Heidi Carmen, “Is There a Right Time to Know?: The Right Not to Know and Genetic Testing in Children,” Journal of Law, Medicine & Ethics, Vol. 42, Issue 1 (2014): 19–27.
Bortolotti, Lisa; Widdows, Heather, “The Right Not to Know: The Case of Psychiatric Disorders,” Journal of Medical Ethics, Vol. 37, Issue 11 (2011): 673–76.
Brownsword, Roger; Wale, Jeff, “The Right to Know and the Right Not to Know Revisited: Part One,” Asian Bioethics Review, Vol. 9, Issues 1–2 (2017): 3–18.
Bullock, Emma C., “Free Choice and Patient Best Interests,” Health Care Analysis, Vol. 24, Issue 4 (2016): 374–92.
Chico, Victoria, “Requiring Genetic Knowledge: A Principled Case for Support,” Legal Studies, Vol. 35, Issue 3 (2015): 532–50.
Clarke, Angus; Richards, Martin; Kerzin-Storrar, Lauren; Halliday, Jane; Young, Mary Anne; Simpson, Sheila A.; Featherstone, Katie, et al, “Genetic Professionals’ Reports of Nondisclosure of Genetic Risk Information within Families,” European Journal of Human Genetics, Vol. 13, Issue 5 (2005): 556–62.
Cowley, Lorraine, “What Can We Learn from Patients’ Ethical Thinking about the Right ‘not to Know’ in Genomics? Lessons from Cancer Genetic Testing for Genetic Counselling,” Bioethics, Vol. 30, Issue 8 (2016): 628–35.
Davies, Ben, “The Right Not to Know and the Obligation to Know,” Journal of Medical Ethics, Vol. 46, Issue 5 (2020): 300–303.
Davies, Ben; Savulescu, Julian, “The Right Not to Know: Some Steps towards a Compromise,” Ethical Theory and Moral Practice, Vol. 24, Issue 1 (2021): 137–50.
Gómez-Vírseda, Carlos; De Maeseneer, Yves; Gastmans, Chris, “Relational Autonomy: What Does It Mean and How Is It Used in End-of-Life Care? A Systematic Review of Argument-Based Ethics Literature,” BioMed Central Medical Ethics, Vol. 20, Issue 1 (2019): 1–15.
Green, Robert C.; Berg, Jonathan S.; Grody, Wayne W.; Kalia, Sarah S.; Korf, Bruce R.; Martin, Christa L.; McGuire, Amy L., et al, “ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing,” Genetics in Medicine, Vol. 15, Issue 7 (2013): 574.
Harris, J.; Keywood, K., “Ignorance, Information and Autonomy,” Theoretical Medicine and Bioethics, Vol. 22, Issue 5 (2001): 415–36.
Harris, John, “Is There a Right Not to Know?” Journal of Medical Ethics, Vol. 46, Issue 6 (2020): 414–15.
Häyry, Matti; Takala, Tuija, “Genetic Information, Rights, and Autonomy,” Theoretical Medicine and Bioethics, Vol. 22, Issue 5 (2001): 403–14.
Herring, Jonathan; Foster, Charles, “‘Please Don’t Tell Me’. The Right Not to Know,” Cambridge Quarterly of Healthcare Ethics, Vol. 21, Issue 1 (2012): 20–29.
Hull, R. T., “Informed Consent: Patient’s Right or Patient’s Duty?” Journal of Medicine and Philosophy, Vol. 10, Issue 2 (1985): 183–98.
Knoppers, Bartha Maria, “Introduction: From the Right to Know to the Right Not to Know,” Journal of Law, Medicine and Ethics, Vol. 42, Issue 1 (2014): 6–10.
Laurie, G., “Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications,” Journal of Law, Medicine & Ethics, Vol. 42, Issue 1 (2014): 53–63.
Laurie, Graeme, “In Defence of Ignorance: Genetic Information and the Right Not to Know,” European Journal of Health Law, Vol. 6, Issue 2 (1999): 119–32.
Loi, Michele, “Food Labels, Genetic Information, and the Right Not to Know,” Kennedy Institute of Ethics Journal, Vol. 24, Issue 4 (2014): 323–44.
McDougall, Rosalind, “Rethinking the ‘Right Not to Know,’” Monash Bioethics Review, Vol. 23, Issue 1 (2014): 22–36.
Mirshekari, Abbas; Zargari, Jamshid, “Critically Rethinking the Right Not to Know: Legal Ambiguity and Theoretical Fragility,” Bond Law Review, Vol. 37, Issue 1 (2025): 137-62.
O’Daniel, Julianne. “Genetic Testing, Psychological Implications,” Encyclopedia of Behavioral Medicine (2020): 932–33.
Parker, Michael; Lucassen, Anneke M., “Genetic Information: A Joint Account?” British Medical Association, Vol. 329, Issue 7458 (2004): 165–67.
Räikkä, Juha, “Freedom and a Right (Not) to Know,” Bioethics, Vol. 12, Issue 1 (1998): 49–63.
Rew, Lynn; Kaur, Mandeep; McMillan, Anna; MacKert, Michael; Bonevac, Daniel, “Systematic Review of Psychosocial Benefits and Harms of Genetic Testing,” Issues in Mental Health Nursing, Vol. 31, Issue 10 (2010): 631–45.
Rhodes, Rosamond, “Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge,” Journal of Medicine and Philosophy, Vol. 23, Issue 1 (1998): 10–30.
Schuurman, Agnes G.; Van Der Kolk, Dorina M.; Verkerk, Marian A.; Birnie, Erwin; Ranchor, Adelita V.; Plantinga, Mirjam; Van Langen, Irene M., “Maximising the Efficiency of Clinical Screening Programmes: Balancing Predictive Genetic Testing with a Right Not to Know,” European Journal of Human Genetics, Vol. 23 (2015): 1124–28.
Shaw, M. W., “Testing for the Huntington Gene: A Right to Know, a Right Not to Know, or a Duty to Know,” American Journal of Medical Genetics, Vol. 26 (1987).
Sheehan, Mark, “Can Broad Consent Be Informed Consent?” Public Health Ethics, Vol. 4, Issue 3 (2011): 226–35.
Simm, Kadri, “Biobanks and Feedback,” In The Right to Know and the Right Not to Know, (Cambridge: Cambridge University Press, 2014), 55–69.
Sommerville, Ann; English, Veronica, “Genetic Privacy: Orthodoxy or Oxymoron?” Journal of Medical Ethics, Vol. 25, Issue 2 (1999): 144–50.
Spriggs, Merle; Olsson, Craig A.; Hall, Wayne, “How Will Information about the Genetic Risk of Mental Disorders Impact on Stigma?” Australian & New Zealand Journal of Psychiatry, Vol. 42, Issue 3 (2008): 214–20.
Surbone, A., “Genetic Medicine: The Balance between Science and Morality,” Familial Breast Cancer Screening: Ethical and Social Implications, Vol. 15 (2004): 60–64.
Wachbroit, Robert Samuel, “The Question Not Asked: The Challenge of Pleiotropic Genetic Tests,” Kennedy Institute of Ethics Journal, Vol. 8, Issue 2 (1998): 131–44.
Wilson, Jane, “To Know or Not to Know? Genetic Ignorance, Autonomy and Paternalism,” Bioethics, Vol. 19, Issues 5–6 (2005): 492–504.
Books:
Beitz, Charles R., The Idea of Human Rights, 1st ed. (Oxford: Oxford University Press, 2011).
Chadwick, Ruth; Levitt, Mairi; Shickle, Darren, The Right to Know and the Right Not to Know, (Avebury, 1997).
Chadwick, Ruth; Levitt, Mairi; Shickle, Darren, The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility, (Cambridge: Cambridge University Press, 2014).
Faden, Ruth R., The History and Theory of Informed Consent (Oxford: Oxford University Press, 1986).
Florini, Ann, The Right to Know: Transparency for an Open World (New York: Columbia University Press, 2012).
Furmston, M. P.; Cheshire, G. C.; Fifoot, C. H. S., Cheshire, Fifoot and Furmston’s Law of Contract, (Oxford: Oxford University Press, 2017).
Gaskell, George; Bauer, Martin W., Genomics and Society: Legal, Ethical and Social Dimensions, (London: Earthscan, 2007).
Gillon, Raanan, Principles of Health Care Ethics, (Chichester: Wiley, 1996).
Harper, Peter S., Clarke, Angus, Genetics, Society, and Clinical Practice, (Oxford: BIOS Scientific Publishers, 1997).
Harris, John, The Value of Life: An Introduction to Medical Ethics, (London: Routledge, 2006).
Hart, Herbert Lionel Adolphus, The Concept of Law, 3rd ed. (Oxford: Oxford University Press, 2012).
Haworth, Lawrence, Autonomy: An Essay in Philosophical Psychology and Ethics, (New Haven: Yale University Press, 1986).
Laub, Dori; Auerhahn, Nanette, “Knowing and Not Knowing: Forms of Traumatic Memory,” In Psychoanalysis and Holocaust Testimony: Unwanted Memories of Social Trauma, (Taylor and Francis, 2017), 32–42.
Lauren, Paul Gordon, Evolution of International Human Rights: Visions Seen, 3rd ed. (Philadelphia: University of Pennsylvania Press, Inc., 2013).
Laurie, Graeme, “Privacy and the Right Not to Know: A Plea for Conceptual Clarity,” In The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility, (Cambridge: Cambridge University Press, 2014).
Locke, John, Two Treatises of Government, (Clark, NJ: Lawbook Exchange, 2010).
Mill, John Stuart, On Liberty (New Haven: Yale University Press, 2003).
Petrucelli, Jean, Knowing, Not-Knowing and Sort-of-Knowing: Psychoanalysis and the Experience of Uncertainty (London: Routledge, 2018).
Prainsack, Barbara, “DIY Genetics: The Right to Know Your Own Genome,” In The Right to Know and the Right Not to Know, (Cambridge: Cambridge University Press, 2014), 100–115.
Richards, Paul. Law of Contract, (Pitman, 1997).
Smart, J. J. C.; Williams, Bernard, Utilitarianism: For and Against (Cambridge: Cambridge University Press, 1973).
Solove, Daniel J.; Schwartz, Paul M., Privacy Law Fundamentals, 4th ed. (San Francisco: International Association of Privacy Professionals, 2017).
Starr, Paul, The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry, (New York: Basic Books, 2017).
Tierney, Brian, The Idea of Natural Rights, Natural Law and Church Law, 1150-1625, (Grand Rapids, MI: William B. Eerdmans Publishing Co., 2001).
Tuck, Richard, Natural Rights Theories: Their Origin and Development, (Cambridge: Cambridge University Press, 1979).
Waldron, Jeremy. Theories of Rights, (Oxford: Oxford University Press, 1984).
World Health Organization, Genomics and World Health (Geneva, Switzerland: World Health Organization, 2002).
Court Decisions:
ABC v. St George’s Healthcare NHS Trust, )2020( EWHC 455 (QB) (Eng.).
Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972).
Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).
Guerra and Others v. Italy, (1998) 26 EHRR 357.
Hii Chii Kok v. Ooi Peng Jin London Lucien, [2017] SGCA 38.
Montgomery v. Lanarkshire Health Board, [2015] UKSC 11.
Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992).
Pretty v. United Kingdom, 35 Eur. Ct. H.R. 1 (2002).
Schloendorff v. Society of New York Hospital, 211 N.Y. 125 (1914).
Sidaway v Bethlem Hospital [1985] AC 871.
Smith v. Auckland Hospital Board [1965] NZLR 191.
Persian
Books:
Farahi, Seyed Ali, Research on Islamic Jurisprudential Rules (Tehran: Imam Sadegh, 2011). In Persia
Firoozi, Soorna, A Ray of Knowledge in Ancient Iran (Tehran: Samarkand, 2005). In Persia
Katouzian, Nasser, Civil Law: General Rules of Contracts, Vol. 5 (Tehran: Ganj Danesh, 2024). In Persia
Mohabbati, Mahdi, Knowledge and Scholars in Persian Literature (Tehran: Institute for Cultural and Social Studies, 2009). In Persia
Articles:
Jafari Tabar, Hasan, «Az Astin-e Tabiban: A Discourse on the Civil Liability of Physicians», Journal of the Faculty of Law and Political Science, Vol. 41 (1998). In Persia
Jolaee, Soudabeh, «The Patients’ Rights Charter and Strategies for Its Promotion in Iran», Medical Law Journal, Vol. 2, Issue 6 (2008). In Persia
Parsapor, Alireza; Bagheri, Alireza; Larijani, Bagher, «The Patients’ Rights Charter in Iran», Iranian Journal of Medical Ethics and History, Vol. 3, Issue 1 (2013). In Persia