Views of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study

[1]  Edward Blair,et al.  “Not pathogenic until proven otherwise”: perspectives of UK clinical genomics professionals toward secondary findings in context of a Genomic Medicine Multidisciplinary Team and the 100,000 Genomes Project , 2017, Genetics in Medicine.

[2]  Susan Kelly,et al.  A 'joint venture' model of recontacting in clinical genomics: challenges for responsible implementation. , 2017, European journal of medical genetics.

[3]  J. Knight,et al.  Insights from early experience of a Rare Disease Genomic Medicine Multidisciplinary Team: a qualitative study , 2017, European Journal of Human Genetics.

[4]  Debra J. H. Mathews,et al.  Choices for return of primary and secondary genomic research results of 790 members of families with Mendelian disease , 2017, European Journal of Human Genetics.

[5]  A. Clarke,et al.  Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom , 2017, European Journal of Human Genetics.

[6]  M. Szego,et al.  Parents perspectives on whole genome sequencing for their children: qualified enthusiasm? , 2016, Journal of Medical Ethics.

[7]  W. Chung,et al.  Recommendations for reporting of secondary findings in clinical exome and genome sequencing, 2016 update (ACMG SF v2.0): a policy statement of the American College of Medical Genetics and Genomics , 2016, Genetics in Medicine.

[8]  Michael Parker,et al.  Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies , 2016, Genetics in Medicine.

[9]  J. Ivanovich,et al.  Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age , 2016, Clinical genetics.

[10]  L. Garraway,et al.  Oncologists' and Cancer Patients' Views on Whole-Exome Sequencing and Incidental Findings: Results from The CanSeq Study , 2016, Genetics in Medicine.

[11]  S. Bowdin,et al.  The SickKids Genome Clinic: developing and evaluating a pediatric model for individualized genomic medicine , 2016, Clinical genetics.

[12]  B. Knoppers,et al.  Stability of Attitudes to the Ethical Issues Raised by the Return of Incidental Genomic Research Findings in Children: A Follow-Up Study , 2015, Public Health Genomics.

[13]  Davis J. McCarthy,et al.  Factors influencing success of clinical genome sequencing across a broad spectrum of disorders , 2015, Nature Genetics.

[14]  B. Fernandez,et al.  The clinical application of genome-wide sequencing for monogenic diseases in Canada: Position Statement of the Canadian College of Medical Geneticists , 2015, Journal of Medical Genetics.

[15]  A. Lemke,et al.  Stakeholder engagement in policy development: challenges and opportunities for human genomics , 2015, Genetics in Medicine.

[16]  Jennifer B. McCormick,et al.  Patients' views on incidental findings from clinical exome sequencing , 2015, Applied & translational genomics.

[17]  Erwin Birnie,et al.  Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature , 2014, Genetics in Medicine.

[18]  J. Veltman,et al.  Clinical exome sequencing in daily practice: 1,000 patients and beyond , 2014, Genome Medicine.

[19]  Amie M. Blanco,et al.  Lynch Syndrome Patients’ Views of and Preferences for Return of Results Following Whole Exome Sequencing , 2014, Journal of Genetic Counseling.

[20]  J. Vermeesch,et al.  Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. , 2014, Human reproduction.

[21]  Marc S. Williams,et al.  ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing , 2013, Genetics in Medicine.

[22]  R. Green,et al.  How could disclosing incidental information from whole-genome sequencing affect patient behavior? , 2013, Personalized medicine.

[23]  Susan M Wolf,et al.  Patient Autonomy and Incidental Findings in Clinical Genomics , 2013, Science.

[24]  Robert C. Green,et al.  Ethics and Genomic Incidental Findings , 2013, Science.

[25]  Alexander A. Morgan,et al.  Clinical assessment incorporating a personal genome , 2010, The Lancet.

[26]  P. Sainsbury,et al.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[27]  Muin J Khoury,et al.  What is the clinical utility of genetic testing? , 2006, Genetics in Medicine.

[28]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[29]  Janet K. Williams,et al.  Toward a biopsychosocial model for 21st-century genetics. , 2005, Family process.

[30]  Pascal Borry,et al.  Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics. , 2013, European journal of human genetics : EJHG.