Available in Russian
Author: Yulianna Makarova
DOI: 10.21128/1812-7126-2024-2-167-180
Keywords: genetic test; genetic data; patient confidentiality; the duty of confidentiality; familial genetic risks; genetic exceptionalism; pacing problem
The advent of genetic testing and the impressive progress that has taken place in this area are forcing the law to face the problem of adapting to the pace of development of biomedical technologies, called in scientific circles the “pacing problem”. Today it is obvious that the results of such testing can be important not only for patients, but also for their family members, who, if an inherited genetic mutation is identified, will have an opportunity to begin preventive, therapeutic and diagnostic treatment or make more informed reproductive choices. However, if the patient does not consent to the disclosure of genetic information to relatives, then the health care professional is faced with a dilemma, which is to balance the interests of both the patient and his family members. The article is intended to draw attention to this problem, and therefore it is proposed to familiarize yourself with the circumstances of the high-profile Judgement of the High Court of London in the case ABC v. St George’s Healthcare NHS Trust & Ors. This case was initiated by the daughter of a patient who was diagnosed with a severe genetic mutation — Huntington’s syndrome. Despite the discovery of a hereditary disease, health-care professionals did not inform the applicant about the existing genetic risks due to her father’s refusal to disclose confidential information about the confirmed diagnosis. The article describes the factual side of the case, summarizes and analyzes the legal arguments on the basis of which the final decision was made. It is noted that precisely because of the uniqueness and familial nature of genetic data, the information obtained as a result of testing one person can be extremely important for his relatives. Analyzing the legal consequences of the decision, it was concluded that it is difficult to apply a legal regime to genetic data that sets a high bar of requirements for the disclosure of confidential information. In conclusion, the key arguments of opponents of disclosing genetic information to third parties are outlined, perspectives and solutions are demonstrated that deconstruct at least some of the identified concerns, and possible ways to minimize the identified risks and protect the interests of three parties are proposed: patients, their relatives and health-care professionals themselves.
About the author: Yulianna Makarova – Ph.D. Student, Faculty of Law, Lomonosov Moscow State University, Moscow, Russia .
Citation: Makarova Yu. (2024) Obshchee nasledie: geneticheskie dannye rodstvennikov v predelakh Vysokogo suda Londona [Common heritage: genetic data of relatives in the decision of the High Court of London]. Sravnitel’noe konstitutsionnoe obozrenie, vol.33, no.2, pp.167–180. (In Russian).
References
Chernevskiy D.K., Rozova E.A., Novopol'tseva E.G., Mordvinov A.A. (2022) Uroven' osvedomlennosti kak osnovnaya prichina eticheskikh problem geneticheskikh issledovaniy Level of awareness as the main cause of ethical problems in genetic studies. Neonatologiya: novosti, mneniya, obuchenie, no.4, pp.28–33. (In Russian).
Chico V. (2016) Non-Disclosure of Genetic Risks: The Case for Developing Legal Wrongs. Medical Law International, vol.16, no.1–2, pp.3–26.
Dheensa S., Fenwick A., Shkedi-Rafid S., Crawford G., Lucassen A. (2016) Health-Care Professionals’ Responsibility to Patients’ Relatives in Genetic Medicine: A Systematic Review and Synthesis of Empirical Research. Genetics in Medicine: Official Journal of the American College of Medical Genetics, vol.18, no.4, pp.290–301.
Dove E.S., Chico V., Fay M., Laurie G., Lucassen A.M., Postan E. (2019) Familial Genetic Risks: How Can We Better Navigate Patient Confidentiality and Appropriate Risk Disclosure to Relatives? Journal of Medical Ethics, vol.45, pp.504–507.
Gadzhiev G.A., Voynikanis E.A. (2021) Pacing Problem i vozrozhdenie sudebnogo normotvorchestva Pacing Problem and the revival of judicial rule-making. Zakon, no.6, pp.122–138. (In Russian).
Galimova L.F., Sadykova D.I., Slastnikova E.S., Usova N.E. (2020) Diagnostika semeynoy giperkholesterinemii u detey: kaskadnyy skrining ot teorii k praktike Diagnosis of familial hypercholesterolemia in children: cascade screening from theory to practice. Kardiovaskulyarnaya terapiya i profilaktika, no.3, pp.191–196. (In Russian).
Gorbunova V.N. (2015) Klinicheskaya genetika: uchebnik Сlinical genetics: a textbook, Saint Petersburg: Foliant, pp.23–24. (In Russian).
Van den Heuvel L.M., Maeckelberghe E.L.M., Corrette Ploem M., Christiaans I. (2021) A Genetic Researcher’s Devil’s Dilemma: Warn Relatives about Their Genetic Risk or Respect Confidentiality Agreements with Research Participants? BMC Med Ethics, vol.22, pp.1–7. Available at: https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-021-00721-4 (accessed: 18.06.2024).
Kim J., Garner S. (2019) The Privacy Risks of Direct-to-Consumer Genetic Testing: A Case Study of 23andMe and Ancestry. Washington University Law Review, vol.96, pp.1219–1265.
Logacheva M.D., Pushkarev V.S. (2021) Zarubezhnyy opyt pravovogo regulirovaniya pryamogo potrebitel'skogo geneticheskogo testirovaniya Foreign experience in the legal regulation of direct consumer genetic testing. Aktual'nye problemy rossiyskogo prava, no.8, pp.103–117. (In Russian).
Phillips A., Niemiec E., Howard H.C., Kagkelari K., Borry P., Vears D.F. (2020) Communicating Genetic Information to Family Members: Analysis of Consent Forms for Diagnostic Genomic Sequencing. European Journal of Human Genetics, vol.28, pp.1160–1167.
Vel'tishchev Yu.E., Temin P.A. (eds.) (1998) Nasledstvennye bolezni nervnoy sistemy: rukovodstvo dlya vrachey Hereditary diseases of the nervous system: guide for doctors, Moscow: Meditsina. (In Russian).
Voronin S.V., Kutsev S.I. (2022) Neonatal'nyy skrining na nasledstvennye zabolevaniya v Rossii: vchera, segodnya, zavtra Neonatal screening for hereditary diseases in Russia: yesterday, today, and tomorrow. Neonatologiya: novosti, mneniya, obuchenie, no.4, pp.34–39. Available at: https://edu-sirano.ru/uploads/article/2579/Voronin.pdf.pdf (accessed: 18.06.2024). (In Russian).
Weller S., Lyle K., Lucassen A. (1982) Re-Imagining “The Patient”: Linked Lives and Lessons from Genomic Medicine. Social Science & Medicine, vol.297, pp.1–8. Available at: https://www.sciencedirect.com/science/article/pii/S0277953622001125 (accessed: 18.06.2024).