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Sökning: WFRF:(Howard Heidi C.) > Recontacting patien...

LIBRIS Formathandbok  (Information om MARC21)
FältnamnIndikatorerMetadata
00005573naa a2200553 4500
001oai:DiVA.org:uu-376808
003SwePub
008190222s2019 | |||||||||||000 ||eng|
0247 a https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-3768082 URI
0247 a https://doi.org/10.1038/s41431-018-0285-12 DOI
040 a (SwePub)uu
041 a engb eng
042 9 SwePub
072 7a ref2 swepub-contenttype
072 7a art2 swepub-publicationtype
1001 a Carrieri, Danieleu Univ Exeter, Egenis, England4 aut
2451 0a Recontacting patients in clinical genetics services :b recommendations of the European Society of Human Genetics
264 c 2018-10-11
264 1b NATURE PUBLISHING GROUP,c 2019
338 a electronic2 rdacarrier
520 a 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.
650 7a MEDICIN OCH HÄLSOVETENSKAPx Hälsovetenskapx Medicinsk etik0 (SwePub)303102 hsv//swe
650 7a MEDICAL AND HEALTH SCIENCESx Health Sciencesx Medical Ethics0 (SwePub)303102 hsv//eng
7001 a Howard, Heidi Carmenu Uppsala universitet,Centrum för forsknings- och bioetik4 aut0 (Swepub:uu)heiho221
7001 a Benjamin, Carolineu Univ Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England4 aut
7001 a Clarke, Angus J.u Cardiff Univ, Sch Med, Cardiff, S Glam, Wales4 aut
7001 a Dheensa, Sandiu Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England4 aut
7001 a Doheny, Shaneu Cardiff Univ, Sch Med, Cardiff, S Glam, Wales4 aut
7001 a Hawkins, Naomiu Univ Exeter, Law Sch, Exeter, Devon, England4 aut
7001 a Halbersma-Konings, Tanya F.u Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands4 aut
7001 a Jackson, Leighu Univ Exeter, Sch Med, Egenis, England4 aut
7001 a Kayserili, Hulyau Koc Univ KUSoM, Sch Med, Med Genet Dept, Istanbul, Turkey4 aut
7001 a Kelly, Susan E.u Univ Exeter, Egenis, England4 aut
7001 a Lucassen, Anneke M.u Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England;Univ Hosp Southampton NHS Fdn Trust, Wessex Clin Genet Serv, Southampton, Hants, England4 aut
7001 a Mendes, Alvarou Univ Porto, I3S, IBMC Inst Mol & Cell Biol, UnIGENe, Porto, Portugal;Univ Porto, I3S, IBMC Inst Mol & Cell Biol, CGPP Ctr Predict & Prevent Genet, Porto, Portugal4 aut
7001 a Rial-Sebbag, Emmanuelleu Univ Paul Sabatier Toulouse III, INSERM, UMR 1027, Toulouse, France4 aut
7001 a Stefansdottir, Vigdisu Natl Univ Hosp Iceland, Dept Genet & Mol Med, Landspitali, Reykjavik, Iceland4 aut
7001 a Turnpenny, Peter D.u Royal Devon & Exeter NHS Fdn Trust, Clin Genet, Exeter, Devon, England4 aut
7001 a van El, Carla G.u Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands4 aut
7001 a van Langen, Irene M.u Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands4 aut
7001 a Cornel, Martina C.u Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands4 aut
7001 a Forzano, Francescau Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, ON, Canada4 aut
7102 a Univ Exeter, Egenis, Englandb Centrum för forsknings- och bioetik4 org
7730 t European Journal of Human Geneticsd : NATURE PUBLISHING GROUPg 27:2, s. 169-182q 27:2<169-182x 1018-4813x 1476-5438
8564 u https://doi.org/10.1038/s41431-018-0285-1y Fulltext
8564 u https://uu.diva-portal.org/smash/get/diva2:1291069/FULLTEXT01.pdfx primaryx Raw objecty fulltext:print
8564 u https://www.nature.com/articles/s41431-018-0285-1.pdf
8564 8u https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-376808
8564 8u https://doi.org/10.1038/s41431-018-0285-1

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