ArticleBMC medical ethics2014
Attitudes of physicians and patients towards disclosure of genetic information to spouse and first-degree relatives: a case study from Turkey.
Article in BMC medical ethics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Pooled it
- Learning about the genetic risk in my family: Preferences of Italian nurses.Journal of community genetics · 2026Article
- Article
- Non-genetic physicians' knowledge, attitudes and behavior towards medical genetics.Wiener klinische Wochenschrift · 2024Article
- Article
- Are there differences in perceptions, preferences and attitudes towards disclosure of genetic testing for Stroke? A qualitative study among stroke-free SIREN-SIBS genomics study participants.Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association · 2023Article
- Comparing the attitudes of physicians and non-physicians toward communicating a patient's BRCA1 mutation to a first-degree relative against a patient's wishes.Journal of community genetics · 2022Article
- How do healthcare professionals respond to ethical challenges regarding information management? A review of empirical studies.Global bioethics = Problemi di bioetica · 2021Article
- Reasonable expectations of privacy in non-disclosure of familial genetic risk: What is it reasonable to expect?European journal of medical genetics · 2019Article
- 'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.Journal of medical ethics · 2016Article
- Social determinants of family health history collection.Journal of community genetics · 2016Article
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2 authors.
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Abstract
backgroundWhen considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.
methodsThe study was carried out in Kocaeli, Turkey. Participants were either paediatricians and gynaecologists registered in Kocaeli, or patients coming to the genetic diagnosis centre for karyotype analysis in 2008. A self-administered paper questionnaire was given to the physicians, and face-to-face structured interviews were conducted with patients. We used a case study involving a man who was found to be a balanced chromosome carrier as a result of a test conducted after his first baby was born with Down's syndrome. However, he refused to share this information with his wife or his siblings. Percentages of characteristics and preferences of the participants were calculated, and the results were analysed using Kruskal-Wallis test.
resultsA total of 155 physicians (68% response rate) and 104 patients (46% response rate) were participated in the study. Twenty-six percent of physicians and 49% of patients believed that genetic information belongs to the whole family. When participants were asked with whom genetic information should be shared for the case study, most of the physicians and patients thought the physician should inform the spouse (79%, 85%, respectively). They were less likely to support a physician informing a sibling (41%, 53%, respectively); whereas, many thought the testee has an obligation to inform siblings (70%, 94%, respectively).
conclusionsAlthough Turkey's national regulations certainly protect the right of privacy of the testee, the participants in our study appear to believe that informing the spouse, who is not personally at risk of serious damage, is the physician's responsibility, while informing siblings, is the testee's responsibility. Therefore we believe that opening ethical discussions with clinicians about the sharing of genetic information, establishing guidelines for practice and sharing these guidelines and the reasons behind them with the wider population, will help to pre-empt ethical dilemmas.
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