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Health-care professionals responsibility to patients relatives in genetic
medicine: a systematic review and synthesis of empirical research
#MMPMID26110233
Dheensa S
; Fenwick A
; Shkedi-Rafid S
; Crawford G
; Lucassen A
Genet Med
2016[Apr]; 18
(4
): 290-301
PMID26110233
show ga
PURPOSE: The extent of the responsibility of health-care professionals (HCPs) to
ensure that patients' relatives are told of their risk is unclear. Current
international guidelines take confidentiality to the individual patient as the
default position, but some suggest that disclosure could be default and genetic
information could be conceptualized as familial. METHODS: Our systematic review
and synthesis of 17 studies explored the attitudes of HCPs, patients, and the
public regarding the extent of HCPs' responsibility to relatives with respect to
disclosure. RESULTS: Health-care professionals generally felt a responsibility to
patients' relatives but perceived a variety of reasons why it would be difficult
to act on this responsibility. Public/patient views were more wide-ranging.
Participants identified several competing and overlapping arguments for and
against HCP disclosure: guidelines do not permit/mandate it, privacy, medical
benefit, impact on family dynamics, quality of communication, and respecting
autonomy. CONCLUSION: We argue that HCPs can sometimes share genetic information
without breaching confidentiality and that they could factor into their
considerations the potential harm to family dynamics of nondisclosure. However,
we need more nuanced research about their responsibilities to relatives,
particularly as genomic tests are used more frequently in clinical practice.Genet
Med 18 4, 290-301.
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