Truth Telling: A Theoretical Reflection on "Incidental Findings" in Research Biobanks

Original Article | Pages: 24 - 35
  • Mohammad Rasekh - 1. Nanobiotechnology Research Center, Avicenna Research Institute, ACECR, Tehran, Iran. 2. Professor of Law and Philosophy, Shahid Beheshti University, Tehran, Iran [m-rasekh@sbu.ac.ir]
  • Seyed Ali Azin - Nanobiotechnology Research Center, Avicenna Research Institute, ACECR, Tehran, Iran
  • Faezeh Ameri - Nanobiotechnology Research Center, Avicenna Research Institute, ACECR, Tehran, Iran

Abstract

Background: In research biobanks, the obtained findings are sometimes beyond the prediction of researchers. They have not noticed and foreseen that part of findings and results at the beginning. In particular, when those findings are not pleasing, this question arises whether the researchers should inform the donor of tissue and sample or act in a way as if such findings have never been obtained.

Methods: In this research, which is based on analysis at the levels of moral philosophy and philosophy of rights, primary and secondary texts, and then opinions and views have been studied and analyzed in order to reach certain answer to the questions. This study is mainly about research biobanks, though results and findings of this research also apply to other kinds of biobank.

Results: Various opinions in agreement or disagreement with truth telling–such as those based on nonmaleficence, beneficence, autonomy or right not to know–have been put forward, which all suffer from theoretical shortcomings. It is not possible to base the moral principle on them or challenge it.

Conclusion: In this study, more than anything, the concept of virtue was emphasized in order to show that truth telling is a moral virtue and its opposite, i.e. withholding truth, is a vice. Thus, proposing reasons and claims under, inter alia, the title of interest for withholding the truth does not make it moral, as white lie is always an immoral act and the vague and elastic qualification of "white" cannot remove its moral evilness. Considering the act of truth withholding or lying as moral acts derives from the confusion between theoretical concepts of "rights" and "morality". Accordingly, the moral obligation of researchers or the biobank is truth telling, rather than withholding it. It is not possible to defend "with holding truth" as a moral duty.

References:

  1. Wolf SM, Lawrenz FP, Nelson CA, Kahn JP, Cho MK, Clayton EW, et al. Managing incidental findings in human subjects research: analysis and recommendations. J Law Med Ethics. 2008;36(2):219-48.
  2. Campbell AV. Bioethics: the basics. 2nd ed. New York & London: Routledge; 2017. 126 p.
  3. Sadi. [Golestan]. Mosahih: Mohammad Javad Mashkoor, Tehran: Iqbal, Babe Aval (Dar Sirate Padeshahan), Hekayate Aval; 1963. p. 15-6. Persian.
  4. Zolkefli Y. The ethics of truth-telling in health-care settings. Malays J Med Sci. 2018;25(3):135-9.
  5. Brown JM, Kitson AL, Mcknight TJ. Challenges in caring (explorations in nursing and ethics). 1st ed. Dordrecht: Springer science Business Media Dordrecht; 1992. 116 p.
  6. Bok S. Lying: moral choice in public and private life.1st ed. New York: Vintage Books; 1979. 354 p.
  7. Freeman MA, Parker LS. Answers to questions that weren't asked: the ethical complexities of identifying misattributed paternity during the transplantation process. In: Greenberg R, Gold-berg A, Rodríguez-Arias D, editors. Ethical issues in pediatric organ transplantation. Switzerland: Springer International Publishing; 2016. p. 43-59.
  8. Pence G. Classic cases in medical ethics. 1st ed. Tehran: Markaz Motaleat Va Tahghighate Akhlaghe Pezeshki, Vol. 3; 1994. 158 p.
  9. James R. Lying and the ethics of absolute rules. In: James R, editor. Can ethics provide answers? and other essays on moral philosophy. USA: Rowman and Littlefield Publishers; 1997. p. 129-30.
  10. Andorno R. The right not to know: an autonomy based approach. J Med Ethics. 2004;30(5):435-9.
  11. Beauchamp TL, Childress JF. Principles of biomedical ethics. 7th ed. Oxford: Oxford university press; 2013. 459 p.
  12. Higgs R. On telling patients the truth. In: Kuhse H, Udo S, Peter S, editors. Bioethics: an anthology. USA: John Wiley & Sons, Inc; 2016. 782 p.
  13. Steinbock B, London AJ, Arras JD. 8th ed. Ethical issues in modern medicine: contemporary readings in bioethics. New York: Mc-Graw-Hill; 2012. 850 p.
  14. Stewart BA, Scott R. Telling patients the truth. Online J Health Ethics. 2010;6(1):1-10.
  15. O’Neill O. Autonomy and trust in bioethics. 1st ed. Cambridge: Cambridge university press; 2002. 213 p.
  16. Dworkin G. The theory and practice of autonomy. 1st ed. Cambridge: Cambridge university press; 1988. 173 p.
  17. Beauchamp T. Autonomy and consent. In: Miller FG, Wertheimer A, ediors. The ethics of consent: theory and practice. Oxford: Oxford university press; 2010. p. 55-78.
  18. Kant I. Introduction to the metaphysic of morals. 1st ed. Australia: The university of adelaide library; 2013. Devision I, p. 1.
  19. Christman J. Autonomy in moral and political philosophy. Stanford encyclopedia of philosophy. (2013 and last revised 2015). https:// plato.stanford.edu/entries/autonomy-moral/.
  20. Feinberg J. Harm to others (The moral limits of the criminal law). Vol. 1. Oxford: Oxford university press; 1984. 269 p.
  21. Jackson J. Telling the truth. J Med Ethics. 1991;17(1):5-9.
  22. Rasekh M, Taskhiri M, Eskandari AR, Ameri F. The moral and right. Legal Res Quarterly. 2019;22(87):19-48.
  23. Khorasani A, Bin Hossein MK. [Kifaya osoul]. 1st Publication. Qom: Aal alBayt (PBUT) Institute; 1409 (A. H.). p. 381. Arabic.
  24. Qazali, Abu Hamed Mohamman Bin Moham-mad. [al-Mostasfa Men Elm al-Osoul]. Mo-haqeq: Hamza Bin Zohair Hafez, Madina: Sherka al-Madina al-Monavvara le-Altebaah (Al-Madina Printing and Publication Co. (MPP)). Vol. 2. 1413 (A. H.). p. 482. Arabic.
  25. Heidari SK. [La Zarar Va La Zerar fi al-Islam]. 1st ed. Qom: Dar al-Sadeqin Le al-Tebaah va al-Nashr; 2000. 141 p. Arabic.
  26. Woozley AD. Law and the Legislation of Morality. IN: Caolan AL, Callahan D. Ethics in hard times. London: Plenum press; 1981. p. 143-74.
  27. Mill JS. Utilitarianism. In: Cahn SM, editors. Seven masterpieces of philosophy. London and New York: The Floating Press; 2009. 120 p.
  28. Bentham J. An introduction to the principles of morals and legislation. 1st ed. Kitchener: Batoche Books; 2000. 236 p.
  29. Maclean A. The elimination of morality: reflections on utilitarianism and bioethics. 2nd ed. London: Routledge; 2005. 181 p.
  30. Gert B, Culver CM, Clouser KD. Bioethics: a return to fundamentals. 2nd ed. Oxford: Oxford university press; 2006. 320 p.
  31. Gillon, Raanan. The four principles revisited: a reappraisal. In: Gillon R, editor. Principles of health care ethics. US: John Wiley & Sons; 1994. 1118 p.
  32. Faramarz Qaramaleki A. [The ethics of Muhammad Ibn Zakaryya al- Razi]. 1st ed. Tehran: Moassese Pajouheshi Hekmat Va Fa-lsafeye Iran Va Pajouheshgahe Oloume En-sani Va Motaleate Farhangi; 2012. p. 386-90. Persian.
  33. Wellman C.
  34. Waldron J.
  35. Rasekh M. [Dars goftarhaye falsafeye hagh va falsafeye hoghoughe omumi (Lectures on philosophy of Rights and philosophy of public law)]. 1st ed. Tehran: Khaneye Andishmand-ane Olome Ensani; 2015. 120 p. Persian.
  36. Plato. The Republic, translated by Tom Griffith, in Ferrari G. R. F. (ed.), Cambridge Texts in the History of Political Thought, Cam-bridge: Cambridge University Press, Book IV; 2003. 142 p.
  37. MacIntyre A. After virtue: a study in moral theory. 3rd ed. Notre Dame: University of Notre Dame Press; 2007. 286 p.
  38. William FK. Ethics. 2nd ed. USA: Prentice-Hall; 1973. 98 p.
  39. Al-Jahez, Abi Osman Omar Bin Bahr. Tahzib al-Akhlaq, Taligh: Ebrahim Bin Mohammad, Tanta: Dar al-Sahaba le-Toras; 1989. p. 12-5.
  40. Abou Nasr F. [Resale al-Tanbih Ala Sabil al-Saadah], Mohaqeq: Sobhan Khalifat, Oman: Al-Jamea al-Ordonia; 1987. p. 190-1. Arabic.
  41. Pellegrino ED, Thomasma DC. The virtues in medical practice. 1st ed. Oxford: Oxford university press; 1993. 205 p.
  42. Aristotle. Nicomachean Ethics, Trans and Ed, Roger Crips, Cambridge: Cambridge University press, Book II, Chapter 6; 2004. p. 29.
  43. Aquinas T. Summa theologica, US: Christian Classics Ethereal Library; 1981. 2229 p.
  44. Tabatabai MH. [Almizan Fi Tafsir al-Qoran]. Vol. 1. Beirut: Moasese al-Alami Le al-Mat-buat, 2nd Publication. p. 354-5. Arabic.
  45. Gewirth A. Rights and virtues. Anal Kritik. 1984;6(1):28-48.
  46. Ross WD. The right and the God. Oxford: Oxford university press; 2002. 134 p.
  47. Toosi N, (1382), Mohammad M. [Kashf al-Morad Fi Sharh Tajrid al-Eteghad, Shareh]. 1st ed. Alame Helli. Qom: Moasese Imam Sadeq; 2003. p. 89-91. Persian.
  48. Kant I. On a supposed right to lie from altruistic motives. In: Kuhse H, Schüklenk U, Singer P, editors. Bioethics: an anthology. USA: John Wiley & Sons, Inc; 2015. p. 613-14.

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Rasekh M, Azin SA, Ameri F. Truth Telling: A Theoretical Reflection on "Incidental Findings" in Research Biobanks. Iran J Biomed Law Ethics. 2020;1(2):24-35.