» Articles » PMID: 29700390

Using a Genetic Test Result in the Care of Family Members: How Does the Duty of Confidentiality Apply?

Overview
Journal Eur J Hum Genet
Specialty Genetics
Date 2018 Apr 28
PMID 29700390
Citations 12
Authors
Affiliations
Soon will be listed here.
Abstract

The use of genetic and genomic testing is becoming more widespread in healthcare and more inherited explanations for family history of diseases or conditions are being uncovered. Currently, relevant genetic information is not always used in the care of family members who might benefit from it, because of health professionals' fears of inappropriately breaching another family member's confidence. Such examples are likely to increase as testing possibilities expand. Here we present the case for use of familial information in the care and treatment of family members. We argue that whilst a clinical diagnosis in person A is confidential, the discovery of a familial factor that led to this diagnosis should be available for use in depersonalised form by health professionals to inform the testing and clinical care of other family members. The possibility of such use should be made clear in clinical practice at the time of initial testing, but should not require consent from the person in whom the familial factor was first identified. We call for further debate on these questions in the wake of high profile non-disclosure of genetic information cases, and forthcoming Data Protection legislation changes.

Citing Articles

Public perspectives on healthcare professional-directed communication of hereditary genetic risks: a mixed-method systematic review.

Godino L, Turchetti D, Gentili V, Chiari P, Palese A Eur J Hum Genet. 2025; .

PMID: 39900745 DOI: 10.1038/s41431-025-01790-4.


Development of a digital risk-prediction tool based on family health history for the general population: legal and ethical implications.

Dijkstra T, Ploem M, van Langen I, Sieperda B, Zaal J, Lucassen A J Community Genet. 2024; .

PMID: 39673579 DOI: 10.1007/s12687-024-00761-4.


Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.

Bogaert B, Crevier M, Roth C, Jox R, Barazzetti G J Community Genet. 2024; 15(5):529-538.

PMID: 39292430 PMC: 11549069. DOI: 10.1007/s12687-024-00734-7.


Ethical preparedness and developments in genomic healthcare.

Farsides B, Lucassen A J Med Ethics. 2023; 51(3):213-218.

PMID: 37268409 PMC: 11877103. DOI: 10.1136/jme-2022-108528.


Ethical preparedness in health research and care: the role of behavioural approaches.

Samuel G, Ballard L, Carley H, Lucassen A BMC Med Ethics. 2022; 23(1):115.

PMID: 36397032 PMC: 9672545. DOI: 10.1186/s12910-022-00853-1.


References
1.
Parker M, Lucassen A . Genetic information: a joint account?. BMJ. 2004; 329(7458):165-7. PMC: 478234. DOI: 10.1136/bmj.329.7458.165. View

2.
Mitchell C, Ploem M, Hennekam R, Kaye J . A Duty To Warn Relatives in Clinical Genetics: Arguably 'Fair just and reasonable' in English Law?. Tottels J Prof Neglig. 2016; 32(2):120-136. PMC: 4962911. View

3.
Samuel G, Dheensa S, Farsides B, Fenwick A, Lucassen A . Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach. BMC Med Ethics. 2017; 18(1):47. PMC: 5549302. DOI: 10.1186/s12910-017-0207-8. View

4.
Lucassen A, Gilbar R . Disclosure of genetic information to relatives: balancing confidentiality and relatives' interests. J Med Genet. 2017; 55(4):285-286. DOI: 10.1136/jmedgenet-2017-104843. View