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

Carrieri, Daniele (författare)
Univ Exeter, Egenis, England
Howard, Heidi Carmen (författare)
Uppsala universitet,Centrum för forsknings- och bioetik
Benjamin, Caroline (författare)
Univ Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England
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Clarke, Angus J. (författare)
Cardiff Univ, Sch Med, Cardiff, S Glam, Wales
Dheensa, Sandi (författare)
Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England
Doheny, Shane (författare)
Cardiff Univ, Sch Med, Cardiff, S Glam, Wales
Hawkins, Naomi (författare)
Univ Exeter, Law Sch, Exeter, Devon, England
Halbersma-Konings, Tanya F. (författare)
Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands
Jackson, Leigh (författare)
Univ Exeter, Sch Med, Egenis, England
Kayserili, Hulya (författare)
Koc Univ KUSoM, Sch Med, Med Genet Dept, Istanbul, Turkey
Kelly, Susan E. (författare)
Univ Exeter, Egenis, England
Lucassen, Anneke M. (författare)
Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England;Univ Hosp Southampton NHS Fdn Trust, Wessex Clin Genet Serv, Southampton, Hants, England
Mendes, Alvaro (författare)
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, Portugal
Rial-Sebbag, Emmanuelle (författare)
Univ Paul Sabatier Toulouse III, INSERM, UMR 1027, Toulouse, France
Stefansdottir, Vigdis (författare)
Natl Univ Hosp Iceland, Dept Genet & Mol Med, Landspitali, Reykjavik, Iceland
Turnpenny, Peter D. (författare)
Royal Devon & Exeter NHS Fdn Trust, Clin Genet, Exeter, Devon, England
van El, Carla G. (författare)
Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands
van Langen, Irene M. (författare)
Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands
Cornel, Martina C. (författare)
Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands
Forzano, Francesca (författare)
Guys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, ON, Canada
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 (creator_code:org_t)
2018-10-11
2019
Engelska.
Ingår i: European Journal of Human Genetics. - : NATURE PUBLISHING GROUP. - 1018-4813 .- 1476-5438. ; 27:2, s. 169-182
Relaterad länk:
https://doi.org/10.1...
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https://uu.diva-port... (primary) (Raw object)
https://www.nature.c...
https://urn.kb.se/re...
https://doi.org/10.1...
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  • Tidskriftsartikel (refereegranskat)
Abstract Ämnesord
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  • 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.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Medicinsk etik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Medical Ethics (hsv//eng)

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