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Identifiable relatives in the family history: not without individual consent

The family history is a traditional section of the clinical record. Data on family members in the clinical record may be anonymous but yet these may be easily identifiable; therefore, exposing the relatives of the patient to the fact that a written record is produced, mentioning them, without their...

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Autores principales: Nunes, José Pedro L., Faria, Maria do Sameiro, Abreu Amorim, Carlos
Formato: Online Artículo Texto
Lenguaje:English
Publicado: 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7722405/
https://www.ncbi.nlm.nih.gov/pubmed/33299943
http://dx.doi.org/10.1097/j.pbj.0000000000000061
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author Nunes, José Pedro L.
Faria, Maria do Sameiro
Abreu Amorim, Carlos
author_facet Nunes, José Pedro L.
Faria, Maria do Sameiro
Abreu Amorim, Carlos
author_sort Nunes, José Pedro L.
collection PubMed
description The family history is a traditional section of the clinical record. Data on family members in the clinical record may be anonymous but yet these may be easily identifiable; therefore, exposing the relatives of the patient to the fact that a written record is produced, mentioning them, without their consent. This is in direct contradiction with European data protection and other regulations and in contradiction with a reasonable ethical perspective. For the purpose of obtaining an image of the present state of affairs, we used as a convenience sample, the series of Case Records published in 2019 in The New England Journal of Medicine (January to December). From a total number of 40 reports, identifiable relatives were present in 30. The number of identifiable relatives varied between none and 6. It is not the right of each individual to disclose sensitive clinical information regarding other persons, without consent from these latter. Family history should no longer include identifiable relatives, unless consent is obtained from each identifiable person. The authors offer the following guidelines on this topic: (1) Do not mention any identifiable relative of the patient in the medical history without consent from the said relative; (2) Do not mention in the family history clinical conditions seemingly unrelated to the present clinical situation; (3) Do not mention in the family history clinical conditions that the patient does not (him/) herself have and that may be seen as social stigmata; (4) Consult the institutional Ethics committee in case of reasonable doubt.
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spelling pubmed-77224052020-12-08 Identifiable relatives in the family history: not without individual consent Nunes, José Pedro L. Faria, Maria do Sameiro Abreu Amorim, Carlos Porto Biomed J Original Article The family history is a traditional section of the clinical record. Data on family members in the clinical record may be anonymous but yet these may be easily identifiable; therefore, exposing the relatives of the patient to the fact that a written record is produced, mentioning them, without their consent. This is in direct contradiction with European data protection and other regulations and in contradiction with a reasonable ethical perspective. For the purpose of obtaining an image of the present state of affairs, we used as a convenience sample, the series of Case Records published in 2019 in The New England Journal of Medicine (January to December). From a total number of 40 reports, identifiable relatives were present in 30. The number of identifiable relatives varied between none and 6. It is not the right of each individual to disclose sensitive clinical information regarding other persons, without consent from these latter. Family history should no longer include identifiable relatives, unless consent is obtained from each identifiable person. The authors offer the following guidelines on this topic: (1) Do not mention any identifiable relative of the patient in the medical history without consent from the said relative; (2) Do not mention in the family history clinical conditions seemingly unrelated to the present clinical situation; (3) Do not mention in the family history clinical conditions that the patient does not (him/) herself have and that may be seen as social stigmata; (4) Consult the institutional Ethics committee in case of reasonable doubt. 2020-03-26 /pmc/articles/PMC7722405/ /pubmed/33299943 http://dx.doi.org/10.1097/j.pbj.0000000000000061 Text en Copyright © 2020 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of PBJ-Associação Porto Biomedical/Porto Biomedical Society. All rights reserved. http://creativecommons.org/licenses/by-nc-nd/4.0 This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. http://creativecommons.org/licenses/by-nc-nd/4.0
spellingShingle Original Article
Nunes, José Pedro L.
Faria, Maria do Sameiro
Abreu Amorim, Carlos
Identifiable relatives in the family history: not without individual consent
title Identifiable relatives in the family history: not without individual consent
title_full Identifiable relatives in the family history: not without individual consent
title_fullStr Identifiable relatives in the family history: not without individual consent
title_full_unstemmed Identifiable relatives in the family history: not without individual consent
title_short Identifiable relatives in the family history: not without individual consent
title_sort identifiable relatives in the family history: not without individual consent
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7722405/
https://www.ncbi.nlm.nih.gov/pubmed/33299943
http://dx.doi.org/10.1097/j.pbj.0000000000000061
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