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Informing relatives of their genetic risk: an examination of the Belgian legal context

Abstract

Findings from genomic sequencing can have important implications for patients and relatives. For this reason, most professional guidelines support that patients have an ethical duty to inform relatives and, when disclosure does not occur, most guidelines allow health-care professionals (HCPs) to breach confidentiality. Translating the ethical duties to respect the patient’s confidentiality and prevent harm in at-risk relatives into legislation is a complex issue due to the both personal and familial nature of genetic information. In many countries there is no specific guideline or law addressing family communication of genetic information and thus it is unclear what duties patients and HCPs have towards at-risk relatives. Using Belgium as an example for countries in which this is the case, we examined the existing Belgian legislation in relation to three central topics: (1) patients’ duties to family members, (2) respect for patient confidentiality and privacy, and (3) HCPs’ duties to family members. We then investigated international legal frameworks and compared it with the Belgian context to see to what degree international precedent could aid in the interpretation of Belgian law. Based on our review of the legislation, we make recommendations for the interpretation of current law and examine whether there is sufficient legal precedent to answer the questions central to family communication of genetic information. Although we focus on the specific Belgian legislation, the discussions are relevant for many other countries that have similar legislative approaches.

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References

  1. Forrest L, Delatycki M, Skene L, Aitken M. Communicating genetic information in families–a review of guidelines and position papers. Eur J Hum Genet. 2007;15:612–8. https://doi.org/10.1038/sj.ejhg.5201822

    Article  PubMed  Google Scholar 

  2. Phillips A, Borry P, Van Hoyweghen I, Vears DF. Disclosure of genetic information to family members: a systematic review of normative documents. Genet Med. 2021;23:2038–46. https://doi.org/10.1038/s41436-021-01248-0

    Article  PubMed  Google Scholar 

  3. van den Heuvel LM, Smets EMA, van Tintelen JP, Christiaans I. How to inform relatives at risk of hereditary diseases? A mixed-methods systematic review on patient attitudes. J Genet Couns. 2019;28:1042–58. https://doi.org/10.1002/jgc4.1143

    Article  PubMed  Google Scholar 

  4. Privacy Amendment (Enhancing Privacy Protection) Act 2012 (Cwlth) (Australia).

  5. ABC v St George’s Healthcare NHS Trust. Case No: QB-2013-009529. In the High Court of Justice Queen’s Bench. 2020.

  6. Law No. 2011‐814 dated 7 July 2011‐art. 2. Code de la santé publique. L1131‐1. JORF. (France). 2011.

  7. Soini S. Genetic testing legislation in Western Europe-a fluctuating regulatory target. J Community Genet. 2012;3:143–53. https://doi.org/10.1007/s12687-012-0078-0

    Article  PubMed Central  Google Scholar 

  8. Farnos C, Léonard S, Nicolas P, Borry P, Rial-Sebbag E. Disclosing genetic information to family members: a comparative study in 4 European Countries. Poster presented at the Annual European Society of Human Genetics Conference. 2017.

  9. Shabani M, Vears DF, Borry P, Vinck I. The use of whole genome sequencing in clinical practice: challenges and organisatoral considerations for Belgium–Legal issues–Supplement. Belgian Health Care Knowledge Centre. 2018; Section 2.4.

  10. Belgian Penal Code 1867. Articles 418, 422bis, and 458.

  11. Correctional Court. Limburg 16 November 2018, Limb.Rechtsl., die Keure; 2019. 153 (Belgium).

  12. Jasperson KW, Vu TM, Schwab AL, Neklason DW, Rodriguez-Bigas MA, Burt RW, et al. Evaluating Lynch syndrome in very early onset colorectal cancer probands without apparent polyposis. Fam Cancer. 2010;9:99–107. https://doi.org/10.1007/s10689-009-9290-4

    Article  PubMed  PubMed Central  Google Scholar 

  13. Colon Cancer Population Screening, Center for Cancer Detection. https://dikkedarmkanker.bevolkingsonderzoek.be/ Accessed May 2021.

  14. Belgian Constitution 1994. Article 22.

  15. Belgian Patients’ Rights Act 2002. Article 10.

  16. European Convention on Human Rights 1950. Article 8.

  17. European General Data Protection Regulation 2018. Article 4 and 9.

  18. Code of Medical Deontology 2018, Order of Medicines, Article 25, www.ordomedic.be

  19. Correctional Court. Brussels 27 Feb 2007, NC. Intersentia. 2008. 73, note by Huybrechts L.

  20. Versweyvelt A, Put J, Opgenhaffen T, Van Der Straete I. Beroepsgeheim en hulpverlening, Brugge, Die Keure, 2018;179–84.

  21. Nys H Geneeskunde. Recht en medisch handelen, Mechelen, Kluwer, 2016, 195–8.

  22. Mehrgou A, Akouchekian M. The importance of BRCA1 and BRCA2 genes mutations in breast cancer development. Med J Islam Repub Iran. 2016;30:369.

    PubMed  PubMed Central  Google Scholar 

  23. Breast Cancer Population Screening, Center for Cancer Detection. https://borstkanker.bevolkingsonderzoek.be/ Accessed May 2021.

  24. Cornelis C. Het belang van genetische gegevens in het Belgische recht. Tijdschrift voor gezondheidsrecht. 2017-18;304–5.

  25. Belgian Court of Cassation 13 March 2012, Tijdschrift voor gezondheidsrecht. Wolters Kluwer; 2012-13, 144.

  26. Dierickx A, Buelens J. Het gedeeld beroepsgeheim erkend door het Hof van Cassatie. Tijdschrift voor gezondheidsrecht. 2012-13;149–50.

  27. Balthazar T. Het gedeeld beroepsgeheim is geen uitgesmeerd beroepsgeheim. Tijdschrift voor gezondheidsrecht. 2004-05;144.

  28. Belgian Act on the Quality of Health Care Practices. Articles 36–40.

  29. Dierickx A, Buelens J, Vijverman A. Het recht op de bescherming van de persoonlijke levenssfeer, het medisch beroepsgeheim en de verwerking van persoonsgegevens. In: Dewallens F, Vansweevelt T (eds), Handboek Gezondheidsrecht, II, Antwerpen: Intersentia; 2014, (583) 642–3, nr. 1295.

  30. Correctional Court. Brugge 17 December 2018, NJW. Wolters Kluwer; 2019, 88.

  31. Guldix E, Stuy J, Jacobs K, Rigo A. Het gebruik van genetische informatie–Het ethisch en juridisch kader voor het maatschappelijk gebruik van geïndividualiseerde genetische informatie, Brussel, Federale diensten voor wetenschappelijke, technische en culturele aangelegenheden, 1994;117.

  32. Vansweevelt T. AIDS en recht: een aansprakelijkheids- en verzekeringsrechtelijke studie, Antwerpen: Maklu; 1989;54.

  33. Nationale Raad Orde der Artsen, “Beroepsgeheim en aids–Mededeling aan partner”, TNR 2007, nr. 116, 3, www.ordomedic.be

  34. Nationale Raad Orde der Artsen, “Beroepsgeheim en aids–Mededeling aan partner”, TNR 2009, nr. 125, 10–11, www.ordomedic.be

  35. Belgian Civil Code 1804. Articles 1382 and 1383.

  36. Gilbar R. The passive patient and disclosure of genetic information: can english tort law protect the relatives’ right to know? Int J Law Policy Fam 30, April 2016;30:79–104, https://doi.org/10.1093/lawfam/ebv015

  37. Superior Court of New Jersey 11 July 1996, Safer v. Estate of Pack, Atlantic reporter, 677, 1192, no. 4–5.

  38. Otlowski M. Disclosing genetic information to at-risk relatives: new Australian privacy principles, but uniformity still elusive. Med J Aust. 2015;202:335–7.

    Article  Google Scholar 

  39. Privacy Amendment (Enhancing Privacy Protection) Act 2012 (Cwlth).

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Acknowledgements

Danya Vears acknowledges the infrastructure funding received from the Victorian State Government through the Operational Infrastructure Support (OIS) Program and support by the Australian Government through the Medical Research Future Fund, as part of the Genomics Health Futures Mission (Grant number 76749). Pascal Borry was funded through the European Union’s Horizon 2020 research and innovation programme under granta greement No. 825903.

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Correspondence to Amicia Phillips.

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Phillips, A., Bronselaer, T., Borry, P. et al. Informing relatives of their genetic risk: an examination of the Belgian legal context. Eur J Hum Genet 30, 766–771 (2022). https://doi.org/10.1038/s41431-021-01016-3

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