Title |
Using a genetic test result in the care of family members: how does the duty of confidentiality apply?
|
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Published in |
European Journal of Human Genetics, April 2018
|
DOI | 10.1038/s41431-018-0138-y |
Pubmed ID | |
Authors |
Michael Parker, Anneke Lucassen |
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. |
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Geographical breakdown
Country | Count | As % |
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United Kingdom | 18 | 29% |
Ireland | 2 | 3% |
Australia | 2 | 3% |
Netherlands | 2 | 3% |
Austria | 2 | 3% |
Finland | 2 | 3% |
Vietnam | 1 | 2% |
New Zealand | 1 | 2% |
United States | 1 | 2% |
Other | 3 | 5% |
Unknown | 28 | 45% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 35 | 56% |
Scientists | 22 | 35% |
Practitioners (doctors, other healthcare professionals) | 5 | 8% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 72 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 11 | 15% |
Researcher | 8 | 11% |
Other | 6 | 8% |
Student > Ph. D. Student | 6 | 8% |
Student > Bachelor | 5 | 7% |
Other | 5 | 7% |
Unknown | 31 | 43% |
Readers by discipline | Count | As % |
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Biochemistry, Genetics and Molecular Biology | 12 | 17% |
Medicine and Dentistry | 9 | 13% |
Social Sciences | 6 | 8% |
Agricultural and Biological Sciences | 2 | 3% |
Environmental Science | 2 | 3% |
Other | 9 | 13% |
Unknown | 32 | 44% |