about
Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD studyNurses transforming health care using genetics and genomicsImplications for educating the next generation of nurses on genetics and genomics in the 21st centuryClinical and Biomarker Changes in Premanifest Huntington Disease Show Trial Feasibility: A Decade of the PREDICT-HD StudyExperiences of teens living in the shadow of Huntington Disease.Development of the Huntington disease family concerns and strategies survey from focus group dataLife trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer.Self-reported race and ethnicity of US biobank participants compared to the US CensusA new scale to measure family members' perception of community health care services for persons with Huntington disease.Self Reports of Day-to-Day Function in a Small Cohort of People with Prodromal and Early HD.Assessment of Day-to-Day Functioning in Prodromal and Early Huntington DiseaseCommunication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: a pilot study.Evolution and current status of graduate programs in nursing genetics.Personal factors associated with reported benefits of Huntington disease family history or genetic testing.Challenges assessing clinical endpoints in early Huntington disease.Pregnancy as foreground in cystic fibrosis carrier testing decisions in primary careFrom ecology to base pairs: nursing and genetic science.In their own words: reports of stigma and genetic discrimination by people at risk for Huntington disease in the International RESPOND-HD study.WHODAS 2.0 in prodromal Huntington disease: measures of functioning in neuropsychiatric diseaseFamily carer personal concerns in Huntington disease.Challenges in evaluating next-generation sequence data for clinical decisions.Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.Advancing genetic nursing knowledge.Researcher and institutional review board chair perspectives on incidental findings in genomic research.Ethical issues in genetic testing.Genomics in nursing education.Development of the Huntington disease work function scaleGenetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting.Ethics, policy, and educational issues in genetic testing.Perception, experience, and response to genetic discrimination in Huntington's disease: the Australian results of The International RESPOND-HD study.Couples' coping in prodromal Huntington disease: a mixed methods study.Informed consent and genomic incidental findings: IRB chair perspectives.Increasing participation in genomic research and biobanking through community-based capacity buildingCouples' attributions for work function changes in prodromal Huntington diseasePerceptions of discrimination among persons who have undergone predictive testing for Huntington's diseaseRisk reduction and health promotion behaviors following genetic testing for adult-onset disorders.Caregiving by teens for family members with Huntington disease.A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairsStrategies used by teens growing up in families with Huntington disease.The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.
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Janet K. Williams
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