118 research outputs found
Getting personal: Head and neck cancer management in the era of genomic medicine
BackgroundGenetic testing is rapidly becoming an important tool in the management of patients with head and neck cancer. As we enter the era of genomics and personalized medicine, providers should be aware of testing options, counseling resources, and the benefits, limitations, and future of personalized therapy.MethodsThis article offers a primer to assist clinicians treating patients in anticipating and managing the inherent practical and ethical challenges of cancer care in the genomic era.ResultsClinical applications of genomics for head and neck cancer are emerging. We discuss the indications for genetic testing, types of testing available, implications for care, privacy/disclosure concerns, and ethical considerations. Hereditary genetic syndromes associated with head and neck neoplasms are reviewed, and online genetics resources are provided.ConclusionThis article summarizes and contextualizes the evolving diagnostic and therapeutic options that impact the care of patients with head and neck cancer in the genomic era. © 2015 Wiley Periodicals, Inc. Head Neck 38: E2250–E2258, 2016Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/137443/1/hed24132.pd
Sharing health-related data:A privacy test?
Greater sharing of potentially sensitive data raises important ethical, legal and social issues (ELSI), which risk hindering and even preventing useful data sharing if not properly addressed. One such important issue is respecting the privacy-related interests of individuals whose data are used in genomic research and clinical care. As part of the Global Alliance for Genomics and Health (GA4GH), we examined the ELSI status of health-related data that are typically considered ‘sensitive’ in international policy and data protection laws. We propose that ‘tiered protection’ of such data could be implemented in contexts such as that of the GA4GH Beacon Project to facilitate responsible data sharing. To this end, we discuss a Data Sharing Privacy Test developed to distinguish degrees of sensitivity within categories of data recognised as ‘sensitive’. Based on this, we propose guidance for determining the level of protection when sharing genomic and health-related data for the Beacon Project and in other international data sharing initiatives
Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online pre-purchase information for UK consumers
Genome editing in clinical genetics: points to consider—a statement of the American College of Medical Genetics and Genomics
Points to consider for sharing variant-level information from clinical genetic testing with ClinVar
Laboratory and clinical genomic data sharing is crucial to improving genetic health care: a position statement of the American College of Medical Genetics and Genomics
Joint Position Statement from the International Society for Prenatal Diagnosis (ISPD), the Society for Maternal Fetal Medicine (SMFM), and the Perinatal Quality Foundation (PQF) on the use of genome-wide sequencing for fetal diagnosis
Will New Genetic Techniques Like Exome Sequencing Obviate the Need for Clinical Expertise? No
Cases in Precision Medicine: When Patients Present With Direct-to-Consumer Genetic Test Results
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