Genetic data and electronic health records: a discussion of ethical, logistical and technological considerations
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Eneida A. Mendonça | Umberto Tachinardi | Kimberly Shoenbill | Norman Fost | E. Mendonça | N. Fost | U. Tachinardi | Kimberly A Shoenbill | Kimberly Shoenbill
[1] Joel H. Saltz,et al. caGrid: design and implementation of the core architecture of the cancer biomedical informatics grid , 2006, Bioinform..
[2] Brenda Wilson,et al. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing , 2008, Genetics in Medicine.
[3] Charis Eng,et al. Bioethical and Clinical Dilemmas of Direct-to-Consumer Personal Genomic Testing: The Problem of Misattributed Equivalence , 2010, Science Translational Medicine.
[4] J. Witte,et al. The Scientific Foundation for Personal Genomics: Recommendations from a National Institutes of Health–Centers for Disease Control and Prevention Multidisciplinary Workshop , 2009, Genetics in Medicine.
[5] A. Simopoulos,et al. Genetic Screening: Programs, Principles, and Research – Thirty Years Later , 2008, Public Health Genomics.
[6] BrownRay,et al. Faculty development initiative , 2003 .
[7] Bridget M. Kuehn. NIH shifts focus from sequencing genes to fostering clinical applications. , 2012, JAMA.
[8] M J Malinowski. Separating predictive genetic testing from snake oil: regulation, liabilities, and lost opportunities. , 2000, Jurimetrics.
[9] Geoffrey C. Fox,et al. Hybrid cloud and cluster computing paradigms for life science applications , 2010, BMC Bioinformatics.
[10] Cees van der Vleuten,et al. Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives , 2011, BMC family practice.
[11] Monya Baker. Genome interpreter vies for place in clinical market , 2012, Nature.
[12] H. Willard,et al. Genomic and personalized medicine: foundations and applications. , 2009, Translational research : the journal of laboratory and clinical medicine.
[13] Isaac S. Kohane,et al. Architecture of the Open-source Clinical Research Chart from Informatics for Integrating Biology and the Bedside , 2007, AMIA.
[14] Kensaku Kawamoto,et al. Clinical decision support for genetically guided personalized medicine: a systematic review , 2013, J. Am. Medical Informatics Assoc..
[15] M K Dabney,et al. Counseling by computer: breast cancer risk and genetic testing. Developed by the University of Wisconsin-Madison Department of Medicine and the Program in Medical Ethics. , 2000, Genetic testing.
[16] Laurie Udesky,et al. The ethics of direct-to-consumer genetic testing , 2010, The Lancet.
[17] Jon Emery,et al. Genetics education for primary-care providers , 2002, Nature Reviews Genetics.
[18] M. Guyer,et al. Charting a course for genomic medicine from base pairs to bedside , 2011, Nature.
[19] G. Javitt,et al. In search of a coherent framework: options for FDA oversight of genetic tests. , 2007, Food and drug law journal.
[20] A. Guttmacher,et al. Genomics, Health Care, and Society , 2011 .
[21] Isaac S. Kohane,et al. Technical desiderata for the integration of genomic data into Electronic Health Records , 2012, J. Biomed. Informatics.
[22] Caroline F Wright,et al. Regulating direct-to-consumer genetic tests: What is all the fuss about? , 2011, Genetics in Medicine.
[23] Melissa A. Basford,et al. Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experience. , 2011, Genome research.
[24] Norman Fost,et al. The cystic fibrosis gene: medical and social implications for heterozygote detection. , 1990, JAMA.
[25] Rebekah Rasooly,et al. The Genomic Applications in Practice and Prevention Network , 2009, Genetics in Medicine.
[26] H. Skirton,et al. Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations , 2012, Clinical genetics.
[27] Kathy L. Hudson. Genomics, Health Care, and Society , 2012 .
[29] B. Biesecker,et al. Education about genetic testing for breast cancer susceptibility: patient preferences for a computer program or genetic counselor. , 2001, American journal of medical genetics.
[30] Fiona Miller,et al. Genetic education for primary care providers: improving attitudes, knowledge, and confidence. , 2009, Canadian family physician Medecin de famille canadien.
[31] Susan M. Wolf,et al. The Law of Incidental Findings in Human Subjects Research: Establishing Researchers' Duties , 2008, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.
[32] S. Fullerton,et al. Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium , 2010, Genetics in Medicine.
[33] C. Jordens,et al. Direct‐to‐consumer personal genome testing: ethical and regulatory issues that arise from wanting to ‘know’ your DNA , 2010, Internal medicine journal.
[34] E. Clayton. Informed Consent and Biobanks , 2005, Journal of Law, Medicine & Ethics.
[35] Misha Angrist. Genetic privacy needs a more nuanced approach , 2013, Nature.
[36] B. Biesecker,et al. An interactive computer program can effectively educate patients about genetic testing for breast cancer susceptibility. , 2001, American journal of medical genetics.
[37] N. Fost,et al. An interactive computer program for educating and counseling patients about genetic susceptibility to breast cancer. , 2009, Journal of cancer education : the official journal of the American Association for Cancer Education.
[38] B. Wilfond,et al. National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis. , 1993, JAMA.
[39] Amy L McGuire,et al. Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to consider , 2008, Genetics in Medicine.
[40] Lisa M. Schwartz,et al. PSYCHOLOGICAL SCIENCE IN THE PUBLIC INTEREST Helping Doctors and Patients Make Sense of Health Statistics , 2022 .
[41] A. Solnit,et al. REACTIONS TO THE THREATENED LOSS OF A CHILD: A VULNERABLE CHILD SYNDROME. PEDIATRIC MANAGEMENT OF THE DYING CHILD, PART III. , 1964, Pediatrics.
[42] Ulrich Melcher,et al. Assessing constancy of substitution rates in viruses over evolutionary time , 2010, BMC Bioinformatics.
[43] R. Howell,et al. Secretary's Advisory Committee on Heritable Disorders in Newborns and Children response to the President's Council on Bioethics report: The changing moral focus of newborn screening , 2011, Genetics in Medicine.
[44] Timothy Caulfield,et al. Medicine. The future of personal genomics. , 2007, Science.
[45] Susan M. Wolf,et al. The Challenge of Incidental Findings , 2008, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.
[46] Francis S Collins,et al. Ethics. Identifiability in genomic research. , 2007, Science.
[47] Lainie Friedman Ross,et al. Genetic Exceptionalism vs. Paradigm Shift: Lessons from HIV , 2001, Journal of Law, Medicine & Ethics.
[48] M. Durkin,et al. 2-methylbutyryl-CoA dehydrogenase deficiency in Hmong infants identified by expanded newborn screen. , 2007, WMJ : official publication of the State Medical Society of Wisconsin.
[49] P M Farrell,et al. Cystic Fibrosis Newborn Screening: Impact on Reproductive Behavior and Implications for Genetic Counseling , 1998, Pediatrics.
[50] Ellen Wright Clayton,et al. Newborn Screening Technology: Proceed With Caution , 2006, Pediatrics.
[51] A. Andermann,et al. Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years. , 2008, Bulletin of the World Health Organization.
[52] Vilhjalmur Arnason,et al. Coding and Consent: Moral Challenges of the Database Project in Iceland , 2004, Bioethics.
[53] G. Nolan,et al. Computational solutions to large-scale data management and analysis , 2010, Nature Reviews Genetics.
[54] Gerd Gigerenzer,et al. Collective statistical illiteracy: a cross-cultural comparison with probabilistic national samples: comment on "Statistical numeracy for health". , 2010, Archives of internal medicine.
[55] Mark A. Rothstein,et al. Genetic Exceptionalism and Legislative Pragmatism , 2007, Journal of Law, Medicine & Ethics.
[56] Ronald C. Taylor. An overview of the Hadoop/MapReduce/HBase framework and its current applications in bioinformatics , 2010, BMC Bioinformatics.
[57] Marco Eichelberg,et al. Digital Imaging and Communications in Medicine , 2010 .
[58] C. A. Klein,et al. Cloudy confidentiality: clinical and legal implications of cloud computing in health care. , 2011, The journal of the American Academy of Psychiatry and the Law.
[59] Mildred K. Cho,et al. Understanding Incidental Findings in the Context of Genetics and Genomics , 2008, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.
[60] J. Rashbass. Online Mendelian Inheritance in Man. , 1995, Trends in genetics : TIG.
[61] Alexander A. Morgan,et al. Translational bioinformatics in the cloud: an affordable alternative , 2010, Genome Medicine.
[62] Patrick Rogers,et al. Information warehouse - a comprehensive informatics platform for business, clinical, and research applications. , 2010, AMIA ... Annual Symposium proceedings. AMIA Symposium.
[63] N. Fost,et al. Who should provide genetic education prior to gene testing? Computers and other methods for improving patient understanding. , 1997, Genetic testing.
[64] Karen Eilbeck,et al. A standard variation file format for human genome sequences , 2010, Genome Biology.
[65] Serguei V. S. Pakhomov,et al. Evaluation of family history information within clinical documents and adequacy of HL7 clinical statement and clinical genomics family history models for its representation: a case report , 2010, J. Am. Medical Informatics Assoc..
[66] R. Klitzman,et al. Views of Discrimination among Individuals Confronting Genetic Disease , 2010, Journal of Genetic Counseling.
[67] Eugene J. Schweitzer,et al. Reconciliation of the cloud computing model with US federal electronic health record regulations , 2012, J. Am. Medical Informatics Assoc..
[68] E. Lose,et al. The emerging role of primary care in genetics , 2008, Current opinion in pediatrics.
[69] John A Robertson,et al. The $1000 Genome: Ethical and Legal Issues in Whole Genome Sequencing of Individuals , 2003, The American journal of bioethics : AJOB.
[70] N. Fost,et al. Genetic diagnosis and treatment. Ethical considerations. , 1993, American journal of diseases of children.
[71] B. Wilfond,et al. The cystic fibrosis gene: medical and social implications for heterozygote detection. , 1990, JAMA.
[72] Deborah H. Charbonneau,et al. Genetics Home Reference , 2005 .
[73] H. Mcdonald,et al. Effects of computerized clinical decision support systems on practitioner performance and patient outcomes: a systematic review. , 2005, JAMA.
[74] Alon Y. Halevy,et al. Data integration and genomic medicine , 2007, J. Biomed. Informatics.
[75] Mildred K. Cho,et al. The Future of Personal Genomics , 2007, Science.
[76] Bradford L. Therrell,et al. Including the initial newborn screening bloodspot collection device serial number on birth certificates: basis and recommendations from the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children , 2012, Genetics in Medicine.
[77] Brenda Almond,et al. Genetic profiling of newborns: ethical and social issues , 2006, Nature Reviews Genetics.
[78] Gerd Gigerenzer,et al. Statistical illiteracy undermines informed shared decision making. , 2008, Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen.
[79] Their Families,et al. LONG-TERM OUTCOMES , 2013 .
[80] C J Shonkoff,et al. Reactions to the threatened loss of a child: a vulnerable child syndrome, by Morris Green, MD, and Albert A. Solnit, MD, Pediatrics, 1964;34:58-66. , 1998, Pediatrics.
[81] Albert R. Jonsen,et al. The advent of the ‘unpatients’ , 1996, Nature Medicine.
[82] Nicholas R. Hardiker,et al. Incorporating personalized gene sequence variants, molecular genetics knowledge, and health knowledge into an EHR prototype based on the Continuity of Care Record standard , 2012, J. Biomed. Informatics.
[83] Michael J Green,et al. Genetic Exceptionalism in Medicine: Clarifying the Differences between Genetic and Nongenetic Tests , 2003, Annals of Internal Medicine.
[84] Melissa Martyn,et al. The development of core learning outcomes relevant to clinical practice: identifying priority areas for genetics education for non-genetics specialist registrars. , 2009, Clinical medicine.
[85] A. Janssens,et al. Personal genome testing: Test characteristics to clarify the discourse on ethical, legal and societal issues , 2011, BMC medical ethics.
[86] George Church,et al. Ethical and Practical Guidelines for Reporting Genetic Research Results to Study Participants: Updated Guidelines from a National Heart, Lung, and Blood Institute Working Group , 2010, Circulation. Cardiovascular genetics.
[87] L. Stein. The case for cloud computing in genome informatics , 2010, Genome Biology.
[88] C. Eng,et al. A practical guide to interpretation and clinical application of personal genomic screening , 2009, BMJ : British Medical Journal.
[89] Jörg Schmidtke,et al. Points to consider in assessing and appraising predictive genetic tests , 2010, Journal of Community Genetics.
[90] J R Botkin. Genetic counseling: making room for beneficence. , 1995, The Journal of clinical ethics.
[91] Penny Kyler,et al. Long-term outcomes of the "Genetics in Primary Care" faculty development initiative. , 2009, Family medicine.
[92] Frances P Lawrenz,et al. Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations , 2008, The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics.
[93] M. Galesic,et al. Statistical Numeracy for Health , 2012 .
[94] Monya Baker,et al. Next-generation sequencing: adjusting to data overload , 2010, Nature Methods.
[95] Muin J Khoury,et al. Awareness and utilization of BRCA1/2 testing among U.S. primary care physicians. , 2011, American journal of preventive medicine.
[96] M. A. Bell,et al. The Current Status of Medical Genetics Instruction in U.S. and Canadian Medical Schools , 2007, Academic medicine : journal of the Association of American Medical Colleges.
[97] M Bobrow,et al. The GRAIDS Trial: a cluster randomised controlled trial of computer decision support for the management of familial cancer risk in primary care , 2007, British Journal of Cancer.
[98] L. Dressler,et al. Disclosure of Research Results from Cancer Genomic Studies: State of the Science , 2009, Clinical Cancer Research.
[99] Clinton L. Doggett,et al. The Equal Employment Opportunity Commission , 1990 .
[100] CLINICAL CONSIDERATIONS Definitions used by evaluation of genomic applications in practice and prevention , 2011 .
[101] Don E. Detmer,et al. White Paper: Advancing the Framework: Use of Health Data - A Report of a Working Conference of the American Medical Informatics Association , 2008, J. Am. Medical Informatics Assoc..
[102] Penny Kyler,et al. Educational Needs in Genetic Medicine: Primary Care Perspectives , 2008, Public Health Genomics.
[103] Francis S. Collins,et al. Identifiability in Genomic Research , 2007, Science.
[104] Jeffery R. Botkin,et al. Genetics in Primary Care: A USA Faculty Development Initiative , 2002, Public Health Genomics.
[105] B. Ness,et al. Genomic Research and Incidental Findings , 2008 .
[106] George Hripcsak,et al. Using EHRs to integrate research with patient care: promises and challenges , 2012, J. Am. Medical Informatics Assoc..
[107] Dani Ben-Zvi,et al. How Students Learn Statistics Revisited: A Current Review of Research on Teaching and Learning Statistics , 2007 .
[108] K. Stange,et al. Clinical genetics issues encountered by family physicians , 2005, Genetics in Medicine.
[109] Paolo Campioni,et al. Picture archiving and communication in radiology. , 2003, Rays.
[110] Eran Halperin,et al. Identifying Personal Genomes by Surname Inference , 2013, Science.
[111] Ncbi. National Center for Biotechnology Information , 2008 .
[112] B. Moulton,et al. Aligning Ethics with Medical Decision-Making: The Quest for Informed Patient Choice , 2010, Journal of Law, Medicine & Ethics.
[113] M. Ullman-Cullere,et al. Emerging landscape of genomics in the electronic health record for personalized medicine , 2011, Human mutation.
[114] Gail Javitt,et al. Which way for genetic-test regulation? Assign regulation appropriate to the level of risk , 2010, Nature.
[115] N. Fost,et al. Ethical implications of screening asymptomatic individuals , 1992, FASEB journal : official publication of the Federation of American Societies for Experimental Biology.
[116] R. Klitzman,et al. Exclusion of genetic information from the medical record: ethical and medical dilemmas. , 2010, JAMA.
[117] T A Shannon,et al. Ethical Issues in Genetics , 1999, Theological studies.
[118] R. Altman,et al. The incidentalome: a threat to genomic medicine. , 2006, JAMA.
[119] Edward J Giniat,et al. Cloud computing: innovating the business of health care. , 2011, Healthcare financial management : journal of the Healthcare Financial Management Association.
[120] Lori B. Andrews,et al. Assessing Genetic Risks: Implications for Health and Social Policy , 1994 .
[121] Brian H Shirts,et al. Changing interpretations, stable genes: responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genetic information , 2008, Genetics in Medicine.
[122] M. Greene,et al. Hereditary breast/ovarian and colorectal cancer genetics knowledge in a national sample of US physicians , 2005, Journal of Medical Genetics.
[123] Alexander G Fiks,et al. Designing computerized decision support that works for clinicians and families. , 2011, Current problems in pediatric and adolescent health care.
[124] Elaine Lyon,et al. The GeneInsight suite: a platform to support laboratory and provider use of DNA‐based genetic testing , 2011, Human mutation.
[125] N. Fost,et al. Ethical issues in genetics. , 1992, Pediatric clinics of North America.
[126] Arnold Birenbaum,et al. Health care and society , 1983 .
[127] W Burke,et al. Categorizing genetic tests to identify their ethical, legal, and social implications. , 2001, American journal of medical genetics.
[128] Tina Hambuch,et al. Opportunities and challenges associated with clinical diagnostic genome sequencing: a report of the Association for Molecular Pathology. , 2012, The Journal of molecular diagnostics : JMD.
[129] Gregory Vey. Differential direct coding: a compression algorithm for nucleotide sequence data , 2009, Database J. Biol. Databases Curation.
[130] Susanne B Haga,et al. Ethical, legal, and social implications of biobanks for genetics research. , 2008, Advances in genetics.
[131] Louis M Bell. Designing computerized decision support that works for clinicians and families. Foreword. , 2011, Current problems in pediatric and adolescent health care.
[132] Kathy Hudson,et al. Direct-to-consumer genetic tests, government oversight, and the First Amendment: what the government can (and can't) do to protect the public's health. , 2004, Oklahoma law review.
[133] Bradley Malin,et al. Technical Evaluation: An Evaluation of the Current State of Genomic Data Privacy Protection Technology and a Roadmap for the Future , 2004, J. Am. Medical Informatics Assoc..
[134] Susan C. Weber,et al. STRIDE - An Integrated Standards-Based Translational Research Informatics Platform , 2009, AMIA.
[135] Christoph Lange,et al. Handling the data management needs of high-throughput sequencing data: SpeedGene, a compression algorithm for the efficient storage of genetic data , 2012, BMC Bioinformatics.