Informed consent || Public Health Genomics Knowledge Base (v1.2)

Public Health Genomics Knowledge Base (v1.2)




Last Updated: Oct 27, 2016

• Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.
  Pulford David J et al. BMC medical ethics 2016 Oct 17(1) 63
• Assessment of the Family History of Patients With Ulcerative Colitis at a Single Center in Japan.
  Fujii Tohru, et al. Journal of pediatric gastroenterology and nutrition 2016 11 (5) 512-515
• Informed decision-making about prenatal cfDNA screening: An assessment of written materials.
  Michie Marsha et al. Ethics, medicine, and public health 2(3) 362-371
• "Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing.
  Tomlinson Ashley N et al. Journal of genetic counseling 2016 Feb 25(1) 62-72
• Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population.
  Reeves Ashley et al. Journal of genetic counseling 2016 Feb 25(1) 166-78
• The limits of traditional approaches to informed consent for genomic medicine.
  May Thomas et al. HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues 2014 Sep 26(3) 185-202
• Am I my Family's Keeper? Disclosure Dilemmas in Next Generation Sequencing.
  Wouters Roel H P et al. Human mutation 2016 Sep
• Content Analysis of Informed Consent for whole Genome Sequencing Offered by Direct-to-Consumer Genetic testing Companies.
  Niemiec Emilia et al. Human mutation 2016 Sep
• Joint SOGC-CCMG Opinion for Reproductive Genetic Carrier Screening: An Update for All Canadian Providers of Maternity and Reproductive Healthcare in the Era of Direct-to-Consumer Testing.
  Wilson R Douglas et al. Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obste´trique et gyne´cologie du Canada : JOGC 2016 Aug 38(8) 742-762.e3
• Roles of the Taql and Bsml vitamin D receptor gene polymorphisms in hospital mortality of burn patients.
  Nogueira Glaucia R, et al. Clinics (Sa?o Paulo, Brazil) 2016 8 (8) 470-3
• Ethical issues in pediatric genetic testing and screening.
  Botkin Jeffrey R et al. Current opinion in pediatrics 2016 Sep
• Ethical issues in the evaluation of adults with suspected genetic neuromuscular disorders.
  Su Xiaowei et al. Muscle & nerve 2016 Sep
• Privacy: The myth of anonymity.
  Savage Neil et al. Nature 2016 537(7619) S70-2
• Known unknowns: building an ethics of uncertainty into genomic medicine.
  Newson Ainsley J et al. BMC medical genomics 2016 9(1) 57
• Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses.
  van Teeffelen Sarah R et al. Public health genomics 2016 19(1) 25-33

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Relevant Resources

• Cancer Genomics and Epidemiology Navigator (CGEN)
• Genetics and Genomics Competencies Center (G2C2)
• NIH Genetic Testing Registry
• NIH MedGen Database
• Online Mendelian Inheritance in Man (OMIM)
• PharmGKB