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Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics
- Source :
- European Journal of Human Genetics, 27(2), 169-182. Nature Publishing Group, 2018, ' Recontacting patients in clinical genetics services : recommendations of the European Society of Human Genetics ', European Journal of Human Genetics . https://doi.org/10.1038/s41431-018-0285-1, European Journal of Human Genetics, Carrieri, D, Howard, H C, Benjamin, C, Clarke, A J, Dheensa, S, Doheny, S, Hawkins, N, Halbersma-Konings, T F, Jackson, L, Kayserili, H, Kelly, S E, Lucassen, A M, Mendes, Á, Rial-Sebbag, E, Stefánsdóttir, V, Turnpenny, P D, van El, C G, van Langen, I M, Cornel, M C, Forzano, F & European Society of Human Genetics 2019, ' Recontacting patients in clinical genetics services : recommendations of the European Society of Human Genetics ', European Journal of Human Genetics, vol. 27, no. 2, pp. 169-182 . https://doi.org/10.1038/s41431-018-0285-1
- Publication Year :
- 2019
-
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.<br />NA
- Subjects :
- 0301 basic medicine
Medical Ethics
medicine.medical_specialty
Genetic counseling
Genetic Counseling
030105 genetics & heredity
Medicinsk etik
Biochemistry and molecular biology
Genetics and heredity
03 medical and health sciences
Recontacting
Health care
Genetics
medicine
media_common.cataloged_instance
Humans
European Union
Genetic Testing
European union
Genetics (clinical)
Societies, Medical
media_common
Genetic testing
Duty to Recontact
medicine.diagnostic_test
business.industry
Public consultation
Public relations
B710
Human genetics
030104 developmental biology
Medical genetics
Duty
Utility
Genome
Professionals
Challenges
Consent
Views
Practice Guidelines as Topic
business
Medical ethics
Subjects
Details
- Language :
- English
- ISSN :
- 10184813
- Database :
- OpenAIRE
- Journal :
- European Journal of Human Genetics, 27(2), 169-182. Nature Publishing Group, 2018, ' Recontacting patients in clinical genetics services : recommendations of the European Society of Human Genetics ', European Journal of Human Genetics . https://doi.org/10.1038/s41431-018-0285-1, European Journal of Human Genetics, Carrieri, D, Howard, H C, Benjamin, C, Clarke, A J, Dheensa, S, Doheny, S, Hawkins, N, Halbersma-Konings, T F, Jackson, L, Kayserili, H, Kelly, S E, Lucassen, A M, Mendes, Á, Rial-Sebbag, E, Stefánsdóttir, V, Turnpenny, P D, van El, C G, van Langen, I M, Cornel, M C, Forzano, F & European Society of Human Genetics 2019, ' Recontacting patients in clinical genetics services : recommendations of the European Society of Human Genetics ', European Journal of Human Genetics, vol. 27, no. 2, pp. 169-182 . https://doi.org/10.1038/s41431-018-0285-1
- Accession number :
- edsair.doi.dedup.....182439d614ce8910fb799744ffc5eaef