Dataset Information

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

ABSTRACT:

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.

SUBMITTER: Dheensa S

PROVIDER: S-EPMC4823639 | biostudies-literature | 2016 Apr

REPOSITORIES: biostudies-literature

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Publications

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

Dheensa Sandi S Fenwick Angela A Shkedi-Rafid Shiri S Crawford Gillian G Lucassen Anneke A

Genetics in medicine : official journal of the American College of Medical Genetics 20150625 4

<h4>Purpose</h4>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.<h4>Methods</h4>Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regardi ...[more]

PMID: 26110233

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Project description:BACKGROUND:When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband's or another responsible family member's role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). In New South Wales (NSW), Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP's awareness and experience of the legislation and guidelines. METHODS:An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as 'good' or 'poor'. Chi square tests assessed associations between confidence and knowledge scores. RESULTS:While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and 'good' theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. CONCLUSIONS:There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced.

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Dataset Information

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

Purpose

Methods

Results

Conclusion

Publications

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

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