Research Topics
| AMY LYNN MCGUIRESummaryAffiliation: Baylor College of Medicine Country: USA Publications
Research Grants
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Detail Information
Publications
Confidentiality, privacy, and security of genetic and genomic test information in electronic health records: points to considerAmy L McGuire
From the 1Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Genet Med 10:495-9. 2008..These discussions can help guide policy that will facilitate the biological and clinical resource development to support the introduction of this information into health care...- The need for medical education reform: genomics and the changing nature of health informationElizabeth A Nelson
Undergraduate Medical Education, Baylor College of Medicine, One Baylor Plaza, Houston, Texas 77030, USA
Genome Med 2:18. 2010..Educational reform is needed across the continuum of medical education, from the student to the faculty training them, and requires a shift in focus from factual knowledge to data management and interpretation... - Two cheers for GINA?Amy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030, USA
Genome Med 1:6. 2009..In the mean time, education about GINA and its limitations can help individuals make more informed decisions about genetic testing and participation in genetic research... - The futility of genomic counseling: essential role of electronic health recordsJohn Belmont
Baylor College of Medicine, Department of Molecular and Human Genetics, Houston, Texas 77030, USA
Genome Med 1:48. 2009..Enter the electronic health record. We propose that without the integration of a dynamic uniform electronic health record, counseling patients on the basis of genome-wide data will be futile... - Social networkers' attitudes toward direct-to-consumer personal genome testingAmy L McGuire
Center for Medial Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA
Am J Bioeth 9:3-10. 2009..This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results... - Personal genome research : what should the participant be told?Amy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, BCM420 Houston, Texas 77030, USA
Trends Genet 26:199-201. 2010..L.) experience as a geneticist who recently had his own genome sequenced... - Informed consent in genomics and genetic researchAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Annu Rev Genomics Hum Genet 11:361-81. 2010..All of these models attempt to balance the obligation to respect and protect research participants with the larger social interest in advancing beneficial research as quickly as possible... - DNA data sharing: research participants' perspectivesAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA
Genet Med 10:46-53. 2008..The purpose of this study was to describe research participants' attitudes and judgments about data release and their preferences for varying levels of control over decision-making... - Health system implications of direct-to-consumer personal genome testingAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Public Health Genomics 14:53-8. 2011..In this article, we consider the health system implications of direct-to-consumer personal genome testing, focusing on issues of accountability, both corporate and professional... - Medicine. The future of personal genomicsAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Science 317:1687. 2007 - Ethical and practical challenges of sharing data from genome-wide association studies: the eMERGE Consortium experienceAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Genome Res 21:1001-7. 2011..e., research participants, investigators, and research institutions), provide recommendations for researchers and institutions, and call for clearer guidance from the NIH regarding ethical implementation of its data-sharing policy... - Genetics. No longer de-identifiedAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Baylor College of Medicine, One Baylor Plaza, Suite 310D, Houston, TX 77030, USA
Science 312:370-1. 2006 - Exploring the ELSI universe: critical issues in the evolution of human genomic researchJill M Oliver
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Genome Med 3:38. 2011..A report on the National Human Genome Research Institute's Ethical, Legal, and Social Implications Research Program 2011 Congress, 'Exploring the ELSI Universe', Chapel Hill, North Carolina, USA, 12-14 April 2011... - To share or not to share: a randomized trial of consent for data sharing in genome researchAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX 77030, USA
Genet Med 13:948-55. 2011..Our purpose was to assess the effect on research enrollment and data sharing decisions of three different consent types (traditional, binary, or tiered) with varying levels of control and choices regarding data sharing... - Missed expectations? Physicians' views of patients' participation in medical decision-makingAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77098, USA
Med Care 43:466-70. 2005..A one-dimensional model of shared decision-making based solely on the principle of autonomy fails to account for variability in how physicians allocate decisional priority and is therefore ethically inadequate... - Shaping patients' decisionsJ S Swindell
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
Chest 139:424-9. 2011..In this article, we consider three such misconceptions with the goal of helping physicians to optimally promote their patients' interests... - Beneficent persuasion: techniques and ethical guidelines to improve patients' decisionsJ S Swindell
Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030 4311, USA
Ann Fam Med 8:260-4. 2010..It is time for clinicians also to make use of behavioral psychology in their interactions with patients... - Developing a tissue resource to characterize the genome of pancreatic cancerGeorgios Voidonikolas
Michael E DeBakey Department of Surgery, Baylor College of Medicine, 1709 Dryden, Suite 1500, Houston, TX 77030, USA
World J Surg 33:723-31. 2009..This article summarizes the basic principles that guide the creation of such a repository, including sample processing and preservation techniques, sample size and composition, and collection of clinical data elements... - Meeting the growing demands of genetic researchAmy L McGuire
Center for Medical Ethics and Health Policy, Baylor College of Medicine, USA
J Law Med Ethics 34:809-12. 2006 - Beyond shared decision making: an expanded typology of medical decisionsSimon N Whitney
Department of Family and Community Medicine, Baylor College of Medicine, Houston Center for Education and Research on Therapeutics, Houston, TX 77098 3926, USA
Med Decis Making 28:699-705. 2008..Conflict resolution requires acknowledging the potential for conflict... - Beyond breaking bad news: the roles of hope and hopefulnessSimon N Whitney
Department of Family and Community Medicine, Baylor College of Medicine, Houston, Texas 77098 3926, USA
Cancer 113:442-5. 2008..Hope is important to patients, yet physicians are sometimes unsure how to promote hope in the face of life-threatening illness... - Principal investigator views of the IRB systemSimon N Whitney
Department of Family, Community Medicine, Houston Center for Education, Research on Therapeutics, Baylor College of Medicine, Houston, TX 77098 3926, USA
Int J Med Sci 5:68-72. 2008..Significant concern was expressed about the cost, inefficiency, and irrationality of IRB review. The IRB system works well for some researchers, but our results indicate that other investigators feel the costs outweigh the benefits... - A typology of shared decision making, informed consent, and simple consentSimon N Whitney
Department of Family and Community Medicine, Baylor College of Medicine, Houston 77098, USA
Ann Intern Med 140:54-9. 2004..In the continuing effort to provide patients with appropriate decisional authority over their own medical choices, shared decision making, informed consent, and simple consent each has a distinct role to play... - Research ethics and the challenge of whole-genome sequencingAmy L McGuire
Amy L McGuire is at the Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas 77030, USA
Nat Rev Genet 9:152-6. 2008..Although the issues are not new, we discuss their implications for personal genomics and provide recommendations for appropriate management in the context of research involving individual whole-genome sequencing... - Whole-genome sequencing in a patient with Charcot-Marie-Tooth neuropathyJames R Lupski
Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, TX, USA
N Engl J Med 362:1181-91. 2010..We therefore aimed to assess the usefulness of human whole-genome sequencing for genetic diagnosis in a patient with Charcot-Marie-Tooth disease... - Respect as an organizing normative category for research ethicsAmy L McGuire
Baylor College of Medicine
Am J Bioeth 5:W1-2. 2005 - Research ethics recommendations for whole-genome research: consensus statementTimothy Caulfield
Health Law Institute, University of Alberta, Edmonton, Alberta, Canada
PLoS Biol 6:e73. 2008 - Consent: informed, simple, implied and presumedLaurence B McCullough
Baylor College of Medicine
Am J Bioeth 7:49-50; discussion W3-4. 2007
Research Grants
- Ethical Legal and Social Dimensions of Human Microbiome ResearchAMY LYNN MCGUIRE; Fiscal Year: 2010..We will also host a workshop with members of our research team, study participants, and outside experts to discuss the issues that were identified in the interviews and develop recommendations for managing them. ..
- The ethics of consent for the public release of potentially identifiable DNA dataAmy McGuire; Fiscal Year: 2009..Moreover, it will increase our understanding of participants' judgments and attitudes toward data sharing, which will improve the overall conduct of biomedical research, build public trust, and foster research participation. ..
- Ethical Legal and Social Dimensions of Human Microbiome ResearchAmy McGuire; Fiscal Year: 2009..We will also host a workshop with members of our research team, study participants, and outside experts to discuss the issues that were identified in the interviews and develop recommendations for managing them. ..