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Search: L773:1476 5438 > (2015-2019) > Recontacting patien...

  • Carrieri, DanieleUniv Exeter, Egenis, England (author)

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

  • Article/chapterEnglish2019

Publisher, publication year, extent ...

  • 2018-10-11
  • NATURE PUBLISHING GROUP,2019
  • electronicrdacarrier

Numbers

  • LIBRIS-ID:oai:DiVA.org:uu-376808
  • https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-376808URI
  • https://doi.org/10.1038/s41431-018-0285-1DOI

Supplementary language notes

  • Language:English
  • Summary in:English

Part of subdatabase

Classification

  • Subject category:ref swepub-contenttype
  • Subject category:art swepub-publicationtype

Notes

  • 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.

Subject headings and genre

Added entries (persons, corporate bodies, meetings, titles ...)

  • Howard, Heidi CarmenUppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)heiho221 (author)
  • Benjamin, CarolineUniv Cent Lancashire UCLan, Sch Community Hlth & Midwifery, Preston, Lancs, England;Liverpool Womens NHS Hosp Trust, Merseyside & Cheshire Clin Genet Serv, Liverpool, Merseyside, England (author)
  • Clarke, Angus J.Cardiff Univ, Sch Med, Cardiff, S Glam, Wales (author)
  • Dheensa, SandiUniv Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England (author)
  • Doheny, ShaneCardiff Univ, Sch Med, Cardiff, S Glam, Wales (author)
  • Hawkins, NaomiUniv Exeter, Law Sch, Exeter, Devon, England (author)
  • Halbersma-Konings, Tanya F.Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands (author)
  • Jackson, LeighUniv Exeter, Sch Med, Egenis, England (author)
  • Kayserili, HulyaKoc Univ KUSoM, Sch Med, Med Genet Dept, Istanbul, Turkey (author)
  • Kelly, Susan E.Univ Exeter, Egenis, England (author)
  • Lucassen, Anneke M.Univ Southampton, Fac Med, Clin Eth & Law, Southampton, Hants, England;Univ Hosp Southampton NHS Fdn Trust, Wessex Clin Genet Serv, Southampton, Hants, England (author)
  • Mendes, AlvaroUniv 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 (author)
  • Rial-Sebbag, EmmanuelleUniv Paul Sabatier Toulouse III, INSERM, UMR 1027, Toulouse, France (author)
  • Stefansdottir, VigdisNatl Univ Hosp Iceland, Dept Genet & Mol Med, Landspitali, Reykjavik, Iceland (author)
  • Turnpenny, Peter D.Royal Devon & Exeter NHS Fdn Trust, Clin Genet, Exeter, Devon, England (author)
  • van El, Carla G.Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands (author)
  • van Langen, Irene M.Univ Groningen, Univ Med Ctr Groningen, Dept Genet, Groningen, Netherlands (author)
  • Cornel, Martina C.Vrije Univ, Amsterdam UMC, Sect Community Genet, Dept Clin Genet, Amsterdam, Netherlands;Vrije Univ, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Amsterdam, Netherlands (author)
  • Forzano, FrancescaGuys & St Thomas NHS Fdn Trust, Clin Genet Dept, London, ON, Canada (author)
  • Univ Exeter, Egenis, EnglandCentrum för forsknings- och bioetik (creator_code:org_t)

Related titles

  • In:European Journal of Human Genetics: NATURE PUBLISHING GROUP27:2, s. 169-1821018-48131476-5438

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