Direct-to-Consumer Genetic Testing. Report of the Secretary's Advisory Committee on Genetics, Health, and Society
Bioethics Commissions / Councils
Genetic Screening / Genetic Testing
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Bethesda, MD: Office of Biotechnology Activities [OBA], 2010 April 28: 42 p. [plus appendices]. [Online]. Accessed: http://oba.od.nih.gov/oba/sacghs/reports/SACGHS_DTC_Report_April2010.pdf [2010 June 30]
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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.