FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W2007230147> ?p ?o ?g. }

• W2007230147 endingPage "6" @default.
• W2007230147 startingPage "6" @default.
• W2007230147 abstract "In their recent publication on whole-genomic sequencing (WGS), Ayuso et al1 identify ethical challenges around the disclosure of ‘incidental findings' (IF) and propose recommendations for informed consent (IC) in a clinical setting. They note that WGS could become clinically routine as technologies develop and time and cost of testing decreases. Based on a comprehensive review and analysis of relevant literatures, they propose an ethical return of clinical IF. The authors suggest that at a minimum, the IC form for WGS for diagnostic purposes should include pre-test counseling and general information common to all genetic tests as well as additional content specific to WGS regarding IF (p1).1 Their proposed recommendations draw on Berg's2 category-based binning framework model of disclosure.Ayuso et al1 provide helpful recommendations on both the process and content of IC in clinical WGS. Although we agree with the authors regarding the ethical challenges in clinical WGS, we disagree with one aspect of their recommendations: ‘...it is suggested that… clinically manageable disorders affecting the patient... must always be disclosed to the patient… on the other hand, the possible disclosure of other types of information.... should be discussed and agreed upon in advance with the patient during the informed consent process'1(p 4). In our view, the first part of this statement is paternalistic, in that the clinician denies the patient the choice of ‘not to know' and is predicated upon the ‘physician as gatekeeper' model as opposed to a model of ‘patient as partner' or ‘patient as gatekeeper' of his or her own genomic information. The authors' stance appears counter to the current shift in patient–doctor relationships and the move toward greater patient autonomy, shared decision-making and empowerment in healthcare. It is also inconsistent with the European Convention on Human Rights and Biomedicine3 which states, ‘Everyone is entitled to know any information collected about his or her health. However, the wishes of individuals not to be so informed shall be observed (p 436).'Honoring a patient's choice ‘not to know' respects an individual's autonomy.4 However, taking the position that particular types of WGS information ‘must always be disclosed' with no prior discussion, significantly undermines patient autonomy. There is some evidence in support of this. Participants in our focus group study, which explored lay and patient attitudes about WGS IF clinical disclosure, strongly supported the right to say no to disclosure.5 Following Andorno3 we maintain that the right not to know must be offered but cannot be presumed, and must be ‘activated' by a person's explicit choice. Also, it is not an absolute right; it may be restricted when disclosure relates to serious harm to third persons (p 435).3 Exercising this right ‘not to know' should be an informed choice. The patient and doctor need to discuss the risks and implications of both knowing the results and not knowing them including the reliability of the information.Individuals may have valid reasons for not knowing results. The ‘objective' clinical utility of knowledge may have very different meaning ‘subjectively' for patients in terms of its relevance and manageability for them; all things considered, they simply may make an informed choice not to have the information disclosed to them. The impact that all genetic information has on the individual, including psychological, social and financial consequences or harms, needs to be recognized by clinicians at all stages of disclosure. For instance, discrimination by insurance companies and employers or societal stigma may be a real threat. Other ethical issues may arise; the results may negatively impact autonomy in a broad sense of the word, that is impinge on a person's self-determination, autonomous lifestyle and future life plans.6 Crucially too, regardless of any potential consequences or negative effects that might derive from test results, the right not to know is an essential requirement for a person to decide freely whether or not to undergo WGS (p 147).6Rather than assume disclosure of selective results with no discussion, it is important to understand why some people choose not to know, and to understand what that knowledge might mean in their life/personal contexts, beyond the clinic. As Andorno3 has noted, autonomy understood broadly, offers a theoretical basis for a right not to know one's genetic status.3 We agree with the authors that more dialogue is needed around these issues and our comments are intended to contribute to this debate as new ethical challenges emerge around IF and WGS clinical disclosure." @default.
• W2007230147 created "2016-06-24" @default.
• W2007230147 creator A5039998960 @default.
• W2007230147 creator A5050988677 @default.
• W2007230147 creator A5051852805 @default.
• W2007230147 creator A5053458172 @default.
• W2007230147 creator A5053473478 @default.
• W2007230147 creator A5059176096 @default.
• W2007230147 date "2013-05-15" @default.
• W2007230147 modified "2023-10-09" @default.
• W2007230147 title "Autonomy and the patient's right ‘not to know’ in clinical whole-genomic sequencing" @default.
• W2007230147 cites W2024167463 @default.
• W2007230147 cites W2054875906 @default.
• W2007230147 cites W2064446902 @default.
• W2007230147 cites W2092373383 @default.
• W2007230147 cites W2100734181 @default.
• W2007230147 doi "https://doi.org/10.1038/ejhg.2013.94" @default.
• W2007230147 hasPubMedCentralId "https://www.ncbi.nlm.nih.gov/pmc/articles/3865416" @default.
• W2007230147 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/23674174" @default.
• W2007230147 hasPublicationYear "2013" @default.
• W2007230147 type Work @default.
• W2007230147 sameAs 2007230147 @default.
• W2007230147 citedByCount "9" @default.
• W2007230147 countsByYear W20072301472013 @default.
• W2007230147 countsByYear W20072301472014 @default.
• W2007230147 countsByYear W20072301472015 @default.
• W2007230147 countsByYear W20072301472016 @default.
• W2007230147 countsByYear W20072301472020 @default.
• W2007230147 countsByYear W20072301472022 @default.
• W2007230147 crossrefType "journal-article" @default.
• W2007230147 hasAuthorship W2007230147A5039998960 @default.
• W2007230147 hasAuthorship W2007230147A5050988677 @default.
• W2007230147 hasAuthorship W2007230147A5051852805 @default.
• W2007230147 hasAuthorship W2007230147A5053458172 @default.
• W2007230147 hasAuthorship W2007230147A5053473478 @default.
• W2007230147 hasAuthorship W2007230147A5059176096 @default.
• W2007230147 hasBestOaLocation W20072301471 @default.
• W2007230147 hasConcept C104317684 @default.
• W2007230147 hasConcept C141231307 @default.
• W2007230147 hasConcept C17744445 @default.
• W2007230147 hasConcept C199539241 @default.
• W2007230147 hasConcept C24432333 @default.
• W2007230147 hasConcept C2994067223 @default.
• W2007230147 hasConcept C54355233 @default.
• W2007230147 hasConcept C65414064 @default.
• W2007230147 hasConcept C70721500 @default.
• W2007230147 hasConcept C86803240 @default.
• W2007230147 hasConceptScore W2007230147C104317684 @default.
• W2007230147 hasConceptScore W2007230147C141231307 @default.
• W2007230147 hasConceptScore W2007230147C17744445 @default.
• W2007230147 hasConceptScore W2007230147C199539241 @default.
• W2007230147 hasConceptScore W2007230147C24432333 @default.
• W2007230147 hasConceptScore W2007230147C2994067223 @default.
• W2007230147 hasConceptScore W2007230147C54355233 @default.
• W2007230147 hasConceptScore W2007230147C65414064 @default.
• W2007230147 hasConceptScore W2007230147C70721500 @default.
• W2007230147 hasConceptScore W2007230147C86803240 @default.
• W2007230147 hasIssue "1" @default.
• W2007230147 hasLocation W20072301471 @default.
• W2007230147 hasLocation W20072301472 @default.
• W2007230147 hasLocation W20072301473 @default.
• W2007230147 hasLocation W20072301474 @default.
• W2007230147 hasOpenAccess W2007230147 @default.
• W2007230147 hasPrimaryLocation W20072301471 @default.
• W2007230147 hasRelatedWork W1920751942 @default.
• W2007230147 hasRelatedWork W1991523530 @default.
• W2007230147 hasRelatedWork W2002128513 @default.
• W2007230147 hasRelatedWork W2015132282 @default.
• W2007230147 hasRelatedWork W2020824267 @default.
• W2007230147 hasRelatedWork W2031436818 @default.
• W2007230147 hasRelatedWork W2057739827 @default.
• W2007230147 hasRelatedWork W2075354549 @default.
• W2007230147 hasRelatedWork W4234917198 @default.
• W2007230147 hasRelatedWork W2092874662 @default.
• W2007230147 hasVolume "22" @default.
• W2007230147 isParatext "false" @default.
• W2007230147 isRetracted "false" @default.
• W2007230147 magId "2007230147" @default.
• W2007230147 workType "article" @default.