Duty to Warn
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AbstractInformation about a patient's inherited risk of disease has important ethical and legal implications in clinical practice. Because genetic information is by nature highly personal yet familial, issues of confidentiality arise. Counselling and informed consent before testing are important in view of the social and psychological risks that accompany testing, the complexity of information surrounding testing, and the fact that effective interventions are often not available. Follow-up counselling is also important to help patients integrate test results into their lives and the lives of their relatives. Genetic counselling should be provided by practitioners who have up-to-date knowledge of the genetics of and the tests available for specific diseases, are aware of the social and psychological risks associated with testing, and are able to provide appropriate clinical follow-up. Some physicians may elect to refer patients for genetic counselling and testing. However, it is inevitable that all physicians will be involved in long-term follow-up both by monitoring for disease and by supporting the integration of genetic information into patients' lives.
Canadian Medical Association Journal. 1998 May 19; 158(10): 1309-1313.
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Al-muwakabah al-Shar'iyah li mu'tayat al-handasah al-wirathíyahAbu Ghuddah, 'Abd al-Sattar (2016-01-08)This paper was submitted to the symposium held by the Islamic Organization for Medical Sciences (IOMS) in Kuwait during the period 13-15 October 1998 on genetics. The paper presents detailed juristic answers for different questions raised by the applications of genetic engineering such as prenatal diagnostic testing especially in case of endogamous marriage, gene therapy, genetic privacy and selective abortion.
Al-Wirathah Wa Al-Handasah Al-Wirathiyah Wa Al-Jinum Al-Bashari Wa Al-'Ilaj Al-Jini: Ru'yah Islamiyah (Al-Juz' Al-Awwal) Al-Wirathah Wa Al-Handasah Al-Wirathiyah Wa Al-Jinum Al-Bashari Genetics, Genetic Engineering, Human Genome and Genetic Therapy: An Islamic Perspective (Vol. 1) Genetics, Genetic Engineering and the Human GenomeJundi, Ahmad Raja'i (2016-01-08)
Privacy-preserving genomic testing in the clinic: A model using HIV treatmentMclaren P.J.; Raisaro J.L.; Aouri M.; Rotger M.; Ayday E.; Bartha I.; Delgado M.B.; Vallet Y.; Günthard H.F.; Cavassini M.; et al. (Nature Publishing Group, 2018-04-12)Purpose:The implementation of genomic-based medicine is hindered by unresolved questions regarding data privacy and delivery of interpreted results to health-care practitioners. We used DNA-based prediction of HIV-related outcomes as a model to explore critical issues in clinical genomics.Methods:We genotyped 4,149 markers in HIV-positive individuals. Variants allowed for prediction of 17 traits relevant to HIV medical care, inference of patient ancestry, and imputation of human leukocyte antigen (HLA) types. Genetic data were processed under a privacy-preserving framework using homomorphic encryption, and clinical reports describing potentially actionable results were delivered to health-care providers.Results:A total of 230 patients were included in the study. We demonstrated the feasibility of encrypting a large number of genetic markers, inferring patient ancestry, computing monogenic and polygenic trait risks, and reporting results under privacy-preserving conditions. The average execution time of a multimarker test on encrypted data was 865 ms on a standard computer. The proportion of tests returning potentially actionable genetic results ranged from 0 to 54%.Conclusions:The model of implementation presented herein informs on strategies to deliver genomic test results for clinical care. Data encryption to ensure privacy helps to build patient trust, a key requirement on the road to genomic-based medicine. © 2015 American College of Medical Genetics and Genomics.