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The reuse of genetic information in research and informed consent

European Journal of Human Genetics volume 31, pages 1393–1397 (2023)Cite this article

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Abstract

Important advances in genetics research have been made in recent years. Such advances have facilitated the availability of huge amounts of genetic information that could potentially be reused beyond the original purpose for which such information was obtained. Any such reuse must meet certain ethical criteria to ensure that the dignity, integrity, and autonomy of the individual from whom that information was obtained are protected. The aim of this paper is to reflect on these criteria through a critical analysis of the literature. To guarantee these values, ethical criteria need to be established in several respects. For instance, the question must be posed whether the information requires special attention and protection (so-called genetic exceptionalism). Another aspect to bear in mind is the most appropriate type of consent to be given by the person involved, on the one hand favouring research and the reuse of genetic information while on the other protecting the autonomy of that person. Finally, there is a need to determine what protection such reuse should have in order to avoid detrimental consequences and protect the rights of the individual. The main conclusions are that genetic information requires special care and protection (genetic exceptionalism) and that broad consent is the most practical and trustworthy type of consent for the reuse of genetic information.

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Author information

Authors and Affiliations

  1. Institut Borja de Bioetica, Universitat Ramon Llull, Barcelona, Spain

    David Lorenzo, Montse Esquerda, Margarita Bofarull, Victoria Cusi, Helena Roig, Joan Bertran, Joan Carrera, Francesc Torralba, Francisco José Cambra, Martí Vila & Martina Garriga

  2. EUI San Joan de Deu, Barcelona, Spain

    David Lorenzo

  3. Sant Joan de Deu Terres de Lleida, Lleida, Spain

    Montse Esquerda

  4. Hospital Universitari Sant Joan de Déu Barcelona, Barcelona, Spain

    Francisco José Cambra

  5. Department of Genetic Medicine and Pediatric Institut of Rare Diseases, Hospital Sant Joan de Déu, Barcelona, Spain

    Francesc Palau

  6. Institut de Recerca Sant Joan de Déu, Barcelona, Spain

    Francesc Palau

  7. CIBER de Enfermedades Raras, ISCIII, Madrid, Spain

    Francesc Palau

  8. Division of Pediatrics, University of Barcelona School of Medicine and Health Sciences, Barcelona, Spain

    Francesc Palau

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  1. David Lorenzo
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Contributions

DL, ME, VC and FP developed the research project and wrote the manuscript. MB, HR, JC, JB, FC, MV, MG participated in the discussion, drafted the paper and all authors provided critical revisions.

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Correspondence to Montse Esquerda.

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Lorenzo, D., Esquerda, M., Bofarull, M. et al. The reuse of genetic information in research and informed consent. Eur J Hum Genet 31, 1393–1397 (2023). https://doi.org/10.1038/s41431-023-01457-y

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