A principled approach to bioethical regulation of genetic counseling: mapping the bioethical problems of genetic counseling and models for their solution

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Abstract


Genetic counseling is a field of high-tech medicine, and its development gives rise to many ethical and legal problems associated primarily with the specifics of genetic data. The purpose of this article is to map the problems of bioethical regulation in genetic counseling, as well as approaches to their solution. To structure the problem field, a principlist approach was chosen. Main results: It is shown that bioethical problems of genetic counseling arise not only in connection with adherence to separate bioethical principles, but also in connection with the conflict between the principles of autonomy and beneficence. It is proposed to distinguish two dimensions of this conflict: 1. Individual, associated primarily with the exercise by a person of the right not to know about his/her hereditary risks; 2. Family, associated with the contradiction between the observance of medical secrecy (as part of autonomy) and the potential benefit from informing the patient's relatives about their possible hereditary risks. Conclusions: The models for resolving bioethical collisions highlight new aspects of meaning of autonomy. In the context of genetic counseling, it is possible to understand autonomy not as non-interference, but as an opportunity to control the disposal of genetic data. At the same time, in the context of regulating this disposal, the autonomy of the patient's family members can also be taken into account.


About the authors

Sergey Yu. Shevchenko

Institute of Philosophy of the Russian Academy of Sciences; Kutafin Moscow State Law University (MSAL)

Author for correspondence.
Email: simurg87@list.ru
109240, 12/1 Goncharnaya Str., Moscow, 109240, Russian Federation; 9 Sadovaya - Kudrinskaya str., Moscow, 123995, Russian Federation

Candidate in Philosophy, Researcher, Sector for Humanitarian Expertise and Bioethics, Institute of Philosophy, Russian Academy of Sciences; Senior Research Fellow, Center for Law and Bioethics in Genomic Research and Application of Genetic Technologies, Kutafin Moscow State Law University (MSAL)

Ekaterina M. Shkomova

Lomonosov Moscow State University

Email: eshkomova@yandex.ru
GSP-1, Leninskie Gory, Moscow, 119991, Russian Federation

Candidate in Philosophy, Researcher, Sector for Humanitarian Expertise and Bioethics, Institute of Philosophy, Russian Academy of Sciences; Assistant, Department of Ethics, Lomonosov Moscow State University

References

  1. Ackerman, M. J., Priori, S.G., Willems, S., Berul, C., Brugada, R. & Calkins, H., et al. (2011) HRS/EHRA expert consensus statement on the state of genetic testing for the channelopathies and cardiomyopathies. This document was developed as a partnership between the Heart Rhythm Society (HRS) and the European Heart Rhythm Association (EHRA). Heart Rhythm. 8(8). 1308-1339
  2. ACMG Board of Directors (2015) ACMG policy statement: updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genetics in medicine. 17 (1), 68-69
  3. Andorno, R. (2004) The right not to know: an autonomy based approach. Journal of Medical Ethics. (30), 435-439
  4. Andrews, L.B., Fullarton, J.E., Holtzman & N.A., et al. (1994) Assessing Genetic Risks: Implications for Health and Social Policy. Washington (DC), National Academies Press (US)
  5. Beauchamp, T.L. & Childress, J.F. (2013) Principles of biomedical ethics. 7th ed. New York, Oxford University Press
  6. Biesecker, B.B. (2001) Goals of genetic counseling. Clinical Genetics. (60). 323-330
  7. Bryzgalina, E.V., Alasania, K.Yu., Varkhotov, T.A., Gavrilenko, S.M., Ryzhov, A.L. & Shkomova E.M. (2018) Biobanking: social and humanitarian aspects. Moscow, Moscow State University Publ. (in Russian)
  8. Charron, P., Arad, M., Arbustini, E., Basso, C., Bilinska, Z. & Elliott, P., et al. (2010). Genetic counselling and testing in cardiomyopathies: a position statement of the European Society of Cardiology working group on myocardial and pericardial diseases. European Heart Journal. 31(22), 2715-2726
  9. Clayton, E.W., Evans, B.J., Hazel, J.W & Rothstein, M.A. (2019) The law of genetic privacy: applications, implications, and limitations. Journal of Law and the Biosciences. (1), 1-36
  10. Cohen, S. (2019) The logic of the interaction between beneficence and respect for autonomy. Medicine, health care and philosophy. (2), 297-304
  11. Gilbar, R. & Barnoy, S. (2020) Facing legal barriers regarding disclosure of genetic information to relatives, New Genetics and Society. New Genetics and Society. 39(4), 483-501. Available from: https://doi.org/10.1080/14636778.2020.1755639 [Accessed 3rd December 2020]
  12. Goldenberg, A.J. (2019) Considering Equity in Assessing Familial Benefit From the Return of Genomic Research Results. Pediatrics. 144(6). e20193111
  13. Green, R., Berg, J. & Grody, W. et al. (2013) ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing. Genetics in medicine. 15(7), 565-574. Doi.org/10.1038/gim.2013.73
  14. Hein, I. M., Troost, P. W., Lindeboom, R., Christiaans, I., Grisso, T. & van Goudoever, J. B., et al. (2015). Feasibility of an assessment tool for children's competence to consent to predictive genetic testing: a pilot study. Journal of Genetic Counseling. 24(6). 971-977
  15. Izhevskaya, V.L. (2015) Ethical challenges of clinical application of next generation sequencing. Workbooks on bioethics. Vol. 21. рр. 119-137. (in Russian)
  16. Karsch-Mizrachi, I., Takagi, T. & Cochrane, G. (2018) The international nucleotide sequence database collaboration. Nucleic Acids Research. D1. D48-D51
  17. Kymlicka, W. (2001) Contemporary Political Philosophy: An Introduction. 2nd edition. Oxford: Oxford University Press
  18. Lenk, C. & Frommeld, D. (2015) Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis. Medicine, Health Care and Philosophy. 3. 393-408
  19. Lerner, B., Roberts, J. S., Shwartz, M., Roter, D.L., Green, R. C. & Clark, J. A. (2014) Distinct communication patterns during genetic counseling for late-onset Alzheimer's risk assessment. Patient education and counseling. 94(2), 170-179. Doi.org/10.1016/j.pec.2013.10.019
  20. Lucassen, A. & Hall, A. (2012) Consent and confidentiality in clinical genetic practice: guidance on genetic testing and sharing genetic information. Clinical medicine (London, England). 12(1), 5-6. Doi.org/10.7861/clinmedicine.12-1-5
  21. Matthijs, G., Souche, E., Alders, M., Corveleyn, A., Eck, S. & Feenstra, I., et al. (2016) Guidelines for diagnostic next-generation sequencing. Eur J Hum Genet. 24(1). 2-5
  22. Mishatkina, T. V. (2007) Universal principles, moral norms and values of biomedical ethics. Bioethics and humanitarian expertise. (1), 27-47. (in Russian)
  23. Rendtorff, J. D. & Kemp, P. (2000) Basic Ethical Principles in European Bioethics and Biolaw. Vol. I: Autonomy, Dignity, Integrity and Vulnerability. Barcelona, Institute Borja de Bioetica [and] Centre for Ethics and Law
  24. Rhodes, R. (1998) Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy. 23(1). 10-30
  25. Romanovskaya, O.V. & Bezrukov, O.V. (2014) Family in the provision of medical and social care planning and genetic counseling. Science. Society. State. 3(7). Available from: https://esj. pnzgu.ru/files/esj.pnzgu.ru/romanovskaya_ov_bezrukova_ov_14_3_10.pdf [Accessed 3rd December 2020]. (in Russian)
  26. Saelaert, M., Mertes, H., Moerenhout, T., De Baere, E. & Devisch, I. (2020) Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study. BMC Med Ethics. 21(1). 9. Doi.org/10.1186/s12910-020-0452-0
  27. Schupmann, W., Jamal, L. & Berkman, B.E. (2020) Re-examining the Ethics of Genetic Counselling in the Genomic Era. Bioethical Inquiry. (17). 325-335

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Copyright (c) 2021 Shevchenko S.Y., Shkomova E.M.

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