"Right not to know" as an ethical principle of DNA testing for late-onset diseases
https://doi.org/10.25789/YMJ.2021.75.26
Abstract
The article examines the ethical principle - the ‘right not to know’, associated with DNA testing of diseases with late onset of development, based on the materials of foreign publications. For geneticists and doctors of the Republic of Sakha (Yakutia), this problem will require discussion and decision-making steps, since type I spinocerebellar ataxia as the hereditary late manifestation disease is widespread in the population, DNA testing of which has been used in practical medicine of the republic since the 2000s. Huntington's chorea is the most researched hereditary disease on bioethical issues. According to experts, it is necessary to update the recommended testing guidelines for Huntington's chorea in the context of the principle of ‘right not to know’ with a joint committee of geneticists, neurologists, and legal and ethical experts.
References
1. Grebenshchikova, E. G. Presymptomatic genetic testing: from the right to know to the right not to know / E. G. Grebenshchikova //Moscow: Interregional public organization "Russian Society of History and Philosophy of Science".- 2020.- P. 99-102.
2. Bioethical problems of presymptomatic DNA testing of cerebellar ataxia type 1 in children / S.K. Kononova [et al.] // Children's healthcare in the Republic of Sakha(Yakutia): optimization of work and development strategy. -2003.- P,140-141.
3. Izhevskaya, V. L. Ethical problems of clinical application of modern methods of genome analysis / V. L. Izhevskaya // Molecular biological technologies in medical practice. Novosibirsk: Limited Liability Company "Akademizdat".-2016.-P. 18-31.
4. The Convention "On the Protection of Human Rights and Dignity in connection with the Application of the Achievements of Biology and Medicine: the Convention on Human Rights and Biomedicine". URL:http://www.imbp.ru/BioEtika/Principles/Convention.html
5. Lekhtsier, V. L. Medicine 4P and the situation of the new Oedipus: existential effects of bioprediction / V. L. Lekhtsier // Workbooks on bioethics. Moscow: Moscow University for the Humanities.- 2015.-P. 137-171.
6. Experience in studying ethical, legal and social issues of the use of genetic technologies in Yakutia/ S.K. Kononova [et al.] // Yakut Medical Journal.-2009.-V.2 .- N26.-P.86-89.
7. A new approach to assessing affect and the emotional implications of personal genomic testing for common disease risk / O’Neill S.C. [ et al.] // Public Health Genomics. 2015; 18(2):104–12.
8. Andorno, R. The right not to know: an autonomy based approach /R. Andorno// J Med Ethics.- 2004.-N30.-P.435–40.
9. Avard, DM, Knoppers BM. Ethical dimensions of genetics in pediatric neurology: a look into the future / D.M. Avard, B.M. Knoppers // Semin Pediatr Neurol.- 2002.-V. 9.-N1.-P.53-61.
10. Bertier, G., He´tu M,, Joly Y. Unsolved challenges of clinical whole-exome sequencing: a systematic literaturere view offend - users’ views/G.Bertier, M. He´tu, Y.Joly // BMC Med Genomics.- 2016.-V. 9.-N1.-P.52.
11. Berkman, B.E., Hull S.C., Biesecker L.G. Scrutinizing the Right Not to Know / B.E. Berkman, S.C. Hull, L.G. Biesecker // Am J Bioeth.- 2015.- V.15.-N7.-P.17-9.
12. Berkman, B.E., Chandros S.H. The “Right Not to Know” in the Genomic Era: Time to Break From Tradition? / B.E. Berkman, S.H. Chandros // Am J Bioeth. -2014.-V. 14.-N3.-P. 28–31.
13. Barnoy, S. Genetic testing for late-onset diseases: effect of disease controllability, test predictivity, and gender on the decision to take the test / S. Barnoy // Genet Test. -2007.-V. 11.-N2.-P. 187–92.
14. Berry, A.C. Predictive genetic testing in children/ A.C. Berry// J Med Genet.-1996.-V.33.- N4.-P.313-8.
15. Bioethical issues of preventing hereditary diseases with late onset in the Sakha Republic (Yakutia)/ S.K. Kononova [et al.] // Int J Circumpolar Health. -2014.-V.73: 25062
16. Сowley, L. What can we learn from patients’ ethical thinking about the Right ‘not to know’ in genomics? Lessons from cancer Genetic testing for genetic counselling / L. Сowley // Bioethics .-2016.- V.30.-N8.-P. 628-35.
17. Concern, pressure and lack of knowledge of not wanting to know high-risk status/U. Swartling [et al.] // Eur J Hum Genet.- 2007.-V. 15 .-N5.-P.556–62.
18. Condit, C.M. Public attitudes and beliefs about genetics / C.M. Condit // Annu Rev Genomics Hum Genet.- 2010.-V.11.-P.339–59.
19. Council of Europe: Recommendation no. R (97)5 of the Committee of Ministers to Member States on the Protection of Medical Data. Frits Hondius (1997): Protecting Medical and Genetic Data in: European Journal of Health Law, pp. 361 – 388.
20. Duncan, R.E., Delatycki M.B. Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence? / R.E. Duncan, M.B. Delatycki //Clin Genet.- 2006.- V. 69.-N1.-P.8–16.
21. From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing / J. Savard [ et al.] // AJOB Empirical Bioethics.- 2020.-V. 11.-N1.-P. 63–76.
22. Genomic information and a person’s right not to know: A closer look at variations in hypothetical informational preferences in a German sample /L. Flatau [ et al.] // PLoS ONE 2018, 13(6) : e0198249
23. Genetic fitness and selection intensity in a population affected with high-incidence spinocerebellar ataxia type 1/ Platonov F. [ et al.] // Neurogenetics.2016;17(3):179-85.
24. Gigerenzer, G., Garcia-Retamero R. Cassandra’s regret: The psychology of not wanting to know/ G. Gigerenzer, R. Garcia-Retamero // Psyсhol Rev.- 2017.-V. 124.-N2.-P.179–96.
25. Grady, D., Pollack A. Finding Risks. Not Answers, in Expanding Array of Gene Tests / D. Grady, A. Pollack // The New York Times. - 2014: A17.
26. Guidelines for the molecular genetics predictive test in Huntington’s Disease. Neurology.-1994.-V.44.-P.1533-36.
27. Hofmann, B. Incidental findings of uncertain significance: To know or not to know – that is not the question/ B. Hofmann // Medical Ethics.- 2016.-V.17.-P.13
28. Hawkins, A.K., Ho A. Genetic counseling and the ethical issues around direct to consumer genetic testing / A.K. Hawkins, Ho A.//Journal of Genetic Counseling. -2012.- V. 21(3).= P. 367-373.
29. International Hantington Association and World Federation of Neurology Research Group on Huntington’s Chorea. Neurology.-1994.-V.44.-P.1533-36.
30. Meiser, B., Dunn S. Psychological impact of genetic testing for Huntington’s disease: an update of the literature /B.Meiser, S.Dunn // J Neurol Neurosurg Psychiatry. -2000.-V.69.-P.574-78.
31. Melzer, D., Detmer D., Zimmern R. Pharmacogenetics and public policy: expert views in Europe and North America / D. Melzer, D. Detmer, R. Zimmern // Pharmacogenomics.- 2003.-V. 4.-N6.-P. 689-691.
32. Melnyk, D., Shepperd J.A. Avoiding risk information about breast cancer / D. Melnyk, J.A. Shepperd // Ann Behav Med.- 2012.-V. 44.-N2.-P.216–24.
33. McCullough, L.B. Getting back to the fundamentals of clinical ethics/ L.B. McCullough // The Journal of medicine and philosophy. -2006.- V. 31.-N1.-P.1–6.
34. McCusker, E.A, Loy C.T. Huntington Disease:The Complexities of Making and Disclosing a Clinical Diagnosis After Premanifest Genetic Testing / E.A. McCusker, C.T. Loy // Tremor Other Hyperkinet Mov (NY).- 2017.-V.7.-P. 467.
35. Predictive, pre-natal and diagnostic genetic testing for Huntington’s disease: The experience in Canada from 1987 to 2000/S. Creighton [ et al.] // Clin Genet. -2003.- V.63.-N6.-P.462–75.
36. Predictive testing for Huntington Disease : nonparticipants compared with participants in the Dutch program / I.M. van der Sreenstraten [et al.] //AmJHumGenet.-1994.-V.55.-P.618-25.
37. Proceed with care: direct predictive testing for Huntington Disease/ C.M. Benjamin [ et al.] // Am J Hum Genet. -1994.-V.55.-P. 606-617.
38. Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study /J.M. Bollinger [et al.] //Genet Med.- 2012.-V. 14.-N4.-P.451–7.
39. Ross, L.F., Rothstein M.A., Clayton E.W. Mandatory extended searches in all genome sequencing: "incidental findings", patient autonomy and shared decision making / L.F. Ross, M.A. Rothstein, E.W. Clayton //JAMA.- 2013.- V.310.- P. 367-368.
40. The Right to Ignore Genetic Risk in the Genomic Era – Prenatal testing for Huntington Disease as a paradigm /A. Erez [et al.] // Am J Med Genet A.- 2010.-V 0.-N7.-P. 1774–1780.
41. The Universal Declaration on Human Genome and Human Rights adopted by UNESCO in 1997, though it does not have a legally binding character, contributes definitely to the elaboration of principles related to genetic research and genetic interventions in the countries which signed it. See Christian Byk (1998): A Map to a New Treasure Island: The Human Genome and the Concept of Common Heritage, in: Fujiki /Macer (Eds.): Bioethics in Asia, pp. 26 - 34.
42. Understanding the decision to take the predictive test for Huntington disease / G.J. Meissen [et al.] // Am J Med Genet.-1991.- V.39.-P.404-10.
43. Yaniv, I., Benador D., Sagi M. On not wanting to know and not wanting to inform others: Choices regarding predictive genetic testing/ Yaniv I, Benador D, Sagi M. / I.Yaniv, D. Benador, M. Sagi // Risk, Decision and Policy.- 2004,-V,9,- N4.-P.317–36.
Review
For citations:
Kononova S.K. "Right not to know" as an ethical principle of DNA testing for late-onset diseases. Yakut Medical Journal. 2021;(3):104-108. https://doi.org/10.25789/YMJ.2021.75.26
Views:
15
Email this article 