Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
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| Název: | Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics |
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| Autoři: | 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 |
| Přispěvatelé: | 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) |
| Zdroj: | ISSN: 1018-4813. |
| Informace o vydavateli: | CCSD Nature Publishing Group |
| Rok vydání: | 2018 |
| Sbírka: | Université Toulouse III - Paul Sabatier: HAL-UPS |
| Témata: | 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] |
| Popis: | 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. |
| Druh dokumentu: | article in journal/newspaper |
| Jazyk: | English |
| Relation: | info:eu-repo/semantics/altIdentifier/pmid/30310124; PUBMED: 30310124; PUBMEDCENTRAL: PMC6336881 |
| DOI: | 10.1038/s41431-018-0285-1 |
| Dostupnost: | 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 |
| Přístupové číslo: | edsbas.77075646 |
| Databáze: | BASE |
Nájsť tento článok vo Web of Science | Abstrakt: | 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. |
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| DOI: | 10.1038/s41431-018-0285-1 |