Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom
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| Titel: | Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom |
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| Autoren: | Daniele Carrieri, Sandi Dheensa, Shane Doheny, Angus J Clarke, Peter D Turnpenny, Anneke M Lucassen, Susan E Kelly |
| Quelle: | Eur J Hum Genet |
| Verlagsinformationen: | Springer Science and Business Media LLC, 2017. |
| Publikationsjahr: | 2017 |
| Schlagwörter: | next generation sequencing, Duty to Recontact, 0301 basic medicine, Practice, Health Knowledge, Attitudes, Practice, 0303 health sciences, Attitude of Health Personnel, Health Knowledge, Genetic Counseling, ethics, R1, Article, United Kingdom, 3. Good health, 03 medical and health sciences, Genetic Testing/ethics, Attitudes, Humans, Genetic Testing, Genetic Counseling/ethics, recontact, clinical genetics |
| Beschreibung: | This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other 'mainstream' specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact. |
| Publikationsart: | Article Conference object Other literature type |
| Dateibeschreibung: | application/pdf; text |
| Sprache: | English |
| ISSN: | 1476-5438 1018-4813 |
| DOI: | 10.1038/ejhg.2016.188 |
| Zugangs-URL: | https://europepmc.org/articles/pmc5315519?pdf=render https://pubmed.ncbi.nlm.nih.gov/28051074 https://orca.cardiff.ac.uk/id/eprint/100620/1/ejhg2016188a.pdf https://core.ac.uk/display/82959238 https://www.nature.com/articles/ejhg2016188 https://www.nature.com/articles/ejhg2016188.pdf https://pubmed.ncbi.nlm.nih.gov/28051074/ https://ore.exeter.ac.uk/repository/handle/10871/24800 http://orca.cf.ac.uk/id/eprint/100620 https://eprints.soton.ac.uk/404354/ |
| Rights: | CC BY |
| Dokumentencode: | edsair.doi.dedup.....19a34cbab39af0aad1909c08d765e1fc |
| Datenbank: | OpenAIRE |
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Nájsť tento článok vo Web of Science | Abstract: | This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other 'mainstream' specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact. |
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| ISSN: | 14765438 10184813 |
| DOI: | 10.1038/ejhg.2016.188 |