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Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics

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Title: Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
Authors: Carrieri, Daniele, Howard, Heidi, C, Benjamin, Caroline, Clarke, Angus, J, Dheensa, Sandi, Doheny, Shane, Hawkins, Naomi, Halbersma-Konings, Tanya, F, Jackson, Leigh, Kayserili, Hülya, Kelly, Susan, E, Lucassen, Anneke, M, Mendes, Álvaro, Rial-Sebbag, Emmanuelle, Stefánsdóttir, Vigdís, Turnpenny, Peter, D, van El, Carla, G, van Langen, Irene, M, Cornel, Martina, C, Forzano, Francesca
Contributors: University of Exeter, Uppsala University, University of Central Lancashire Preston (UCLAN), Liverpool Heart and Chest Hospital NHS Trust UK (LH&CH), Cardiff University, University of Southampton, University Medical Center Groningen Groningen (UMCG), Istanbul Medeniyet University Istanbul, Turquie (IMU), Equipe BIOETHICS (CERPOP), Centre d'Epidémiologie et de Recherche en santé des POPulations (CERPOP), Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université Toulouse III - Paul Sabatier (UT3), Université de Toulouse (UT)-Université de Toulouse (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)
Source: ISSN: 1018-4813.
Publisher Information: CCSD
Nature Publishing Group
Publication Year: 2018
Collection: Université Toulouse III - Paul Sabatier: HAL-UPS
Subject Terms: MESH: Duty to Recontact, MESH: European Union, MESH: Societies, Medical / standards, MESH: Genetic Counseling / ethics, MESH: Genetic Counseling / legislation & jurisprudence, MESH: Genetic Counseling / standards, MESH: Genetic Testing / ethics, MESH: Genetic Testing / legislation & jurisprudence, MESH: Genetic Testing / standards, MESH: Humans, MESH: Practice Guidelines as Topic, [SDV]Life Sciences [q-bio]
Description: International audience ; Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.
Document Type: article in journal/newspaper
Language: English
Relation: info:eu-repo/semantics/altIdentifier/pmid/30310124; PUBMED: 30310124; PUBMEDCENTRAL: PMC6336881
DOI: 10.1038/s41431-018-0285-1
Availability: https://ut3-toulouseinp.hal.science/hal-04675046
https://ut3-toulouseinp.hal.science/hal-04675046v1/document
https://ut3-toulouseinp.hal.science/hal-04675046v1/file/CARRERI_2019.pdf
https://doi.org/10.1038/s41431-018-0285-1
Rights: http://creativecommons.org/licenses/by/ ; info:eu-repo/semantics/OpenAccess
Accession Number: edsbas.77075646
Database: BASE
Description
Abstract:International audience ; Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting.
DOI:10.1038/s41431-018-0285-1