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

2.50
Hdl Handle:
http://hdl.handle.net/11287/620894
Title:
Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics.
Authors:
Carrieri, D. [et al]; Turnpenny, Peter D
Abstract:
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.
Citation:
Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. 2018 Eur. J. Hum. Genet.
Publisher:
Nature
Journal:
European journal of human genetics : EJHG
Issue Date:
11-Oct-2018
URI:
http://hdl.handle.net/11287/620894
DOI:
10.1038/s41431-018-0285-1
PubMed ID:
30310124
Additional Links:
http://dx.doi.org/10.1038/s41431-018-0285-1
Type:
Journal Article
Language:
en
ISSN:
1476-5438
Appears in Collections:
Clinical Genetics (Peninsula Genetics); 2018 RD&E publications

Full metadata record

DC FieldValue Language
dc.contributor.authorCarrieri, D. [et al]en
dc.contributor.authorTurnpenny, Peter Den
dc.date.accessioned2018-11-08T10:59:54Z-
dc.date.available2018-11-08T10:59:54Z-
dc.date.issued2018-10-11-
dc.identifier.citationRecontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics. 2018 Eur. J. Hum. Genet.en
dc.identifier.issn1476-5438-
dc.identifier.pmid30310124-
dc.identifier.doi10.1038/s41431-018-0285-1-
dc.identifier.urihttp://hdl.handle.net/11287/620894-
dc.description.abstractTechnological 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.en
dc.language.isoenen
dc.publisherNatureen
dc.relation.urlhttp://dx.doi.org/10.1038/s41431-018-0285-1en
dc.rightsArchived with thanks to European journal of human genetics : EJHGen
dc.subjectWessex Classification Subject Headings::Oncology. Pathology.::Geneticsen
dc.titleRecontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics.en
dc.typeJournal Articleen
dc.identifier.journalEuropean journal of human genetics : EJHGen
dc.type.versionIn press (epub ahead of print)en

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