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Identifiable relatives in the family history: not without individual consent

2020-03-26Journal article Open access
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dc.contributor.authorNunes, José Pedro L.
dc.contributor.authorFaria, Maria Do Sameiro
dc.contributor.authorAbreu Amorim, Carlos
dc.date.accessioned2022-07-11T13:35:19Z
dc.date.available2022-07-11T13:35:19Z
dc.date.issued2020-03-26
dc.description.abstractThe 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.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationNunes JPL, Faria MDS, Abreu Amorim C. Identifiable relatives in the family history: not without individual consent. Porto Biomed J. 2020;5(2):e62. doi:10.1097/j.pbj.0000000000000061pt_PT
dc.identifier.doi10.1097/j.pbj.0000000000000061pt_PT
dc.identifier.issn2444-8672
dc.identifier.issn2444-8664
dc.identifier.urihttp://hdl.handle.net/10400.16/2693
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherWolters Kluwerpt_PT
dc.relation.publisherversionhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC7722405/pt_PT
dc.subjectconsentpt_PT
dc.subjectdata protectionpt_PT
dc.subjectfamily historypt_PT
dc.titleIdentifiable relatives in the family history: not without individual consentpt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceUnited States of Americapt_PT
oaire.citation.issue2pt_PT
oaire.citation.startPagee62pt_PT
oaire.citation.titlePorto Biomedical Journalpt_PT
oaire.citation.volume5pt_PT
person.familyNameFaria
person.givenNameMaria do Sameiro
person.identifier.ciencia-idCD12-BF24-65FE
person.identifier.orcid0000-0002-8061-9289
person.identifier.scopus-author-id6507433703
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublicationad1e4a67-acf1-4b16-9ad8-659ad9fa5bd3
relation.isAuthorOfPublication.latestForDiscoveryad1e4a67-acf1-4b16-9ad8-659ad9fa5bd3

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