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In 1995, the American Society of Human Genetics (ASHG) and American College of Medical Genetics and Genomics (ACMG) jointly published a statement on genetic testing in children and adolescents. In the past 20 years, much has changed in the field of genetics, including the development of powerful new technologies, new data from genetic research on children(More)
Genetic discrimination (GD) is a complex, multifaceted ethical, psychosocial, and legal phenomenon. It is defined as the differential treatment of asymptomatic individuals or their relatives on the basis of their real or assumed genetic characteristics. This article presents an overview of GD within the contemporary international context. It describes the(More)
This paper contains a joint ESHG/ASHG position document with recommendations regarding responsible innovation in prenatal screening with non-invasive prenatal testing (NIPT). By virtue of its greater accuracy and safety with respect to prenatal screening for common autosomal aneuploidies, NIPT has the potential of helping the practice better achieve its aim(More)
BACKGROUND Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the(More)
The Genetic Information Nondiscrimination Act (GINA) of 2008 was the first US legislation to address genetic discrimination. We sought to assess understanding of GINA among individuals affected by the autosomal dominant condition, Huntington disease (HD). We conducted a cross-sectional survey of individuals with varying risk of HD to assess their(More)
The purpose of this study was to identify factors that are associated with experiencing genetic discrimination (GD) among individuals at risk for Huntington disease (HD). Multivariable logistic regression analysis was used to examine factors associated with experiencing GD in data from a cross-sectional, self-report survey of 293 individuals at risk for HD.(More)
OBJECTIVES We assessed the impacts of a Citizens' Reference Panel on the deliberations of a provincial health technology advisory committee and its secretariat, which produce, recommendations for the use of health technologies in Ontario, Canada. METHODS A fourteen-member citizens' reference panel was convened five times between February 2009 and May 2010(More)
OBJECTIVES Guidelines recommend gene-expression profiling (GEP) tests to identify early-stage breast cancer patients who may benefit from chemotherapy. However, variation exists in oncologists' use of GEP. We explored medical oncologists' views of GEP tests and factors impacting its use in clinical practice. METHODS We used a qualitative design,(More)
Personalized (orprecision)medicinepromises touse genomic information to improve the prevention, diagnosis, and treatmentofdisease. This promise is particularly anticipated in the arena of cancer treatment. Cancer centers and commercial laboratories are rapidly developingprogramstoroutinelyanalyze individual cancer genomes to identify therapeutic targets and(More)
There is increasing enthusiasm for genomics and its promise in advancing personalized medicine. Genomic information has been used to personalize health care for decades, spanning the fields of cardiovascular disease, infectious disease, endocrinology, metabolic medicine, and hematology. However, oncology has often been the first test bed for the clinical(More)