Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium

Genome sequencing and carrier testing: decisions on categorization and whether to disclose results of carrier testing

(2017) Patricia Himes et al.   GENETICS IN MEDICINE

Large, Prospective Analysis of the Reasons Patients Do Not Pursue BRCA Genetic Testing Following Genetic Counseling

(2017) Sommer Hayden et al.   Journal of Genetic Counseling

Reasons for Declining Preconception Expanded Carrier Screening Using Genome Sequencing

(2017) Marian J. Gilmore et al.   Journal of Genetic Counseling

Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine

(2016) Robert C. Green et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies

(2016) Michael P. Mackley et al.   GENETICS IN MEDICINE

Participants and Study Decliners’ Perspectives About the Risks of Participating in a Clinical Trial of Whole Genome Sequencing

(2016) Jill Oliver Robinson et al.   Journal of Empirical Research on Human Research Ethics

Swedish parents’ interest in preconception genetic carrier screening

(2016) Maria Ekstrand Ragnar et al.   UPSALA JOURNAL OF MEDICAL SCIENCES

Genetic Counselors’ Perspectives and Practices Regarding Expanded Carrier Screening after Initial Clinical Availability

(2015) Gabriel A. Lazarin et al.   Journal of Genetic Counseling

“Is It Worth Knowing?” Focus Group Participants’ Perceived Utility of Genomic Preconception Carrier Screening

(2015) Jennifer L. Schneider et al.   Journal of Genetic Counseling

GINA, Genetic Discrimination, and Genomic Medicine

(2015) Robert C. Green et al.   NEW ENGLAND JOURNAL OF MEDICINE

Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts (December 2013 Report of the Presidential Commission for the Study of Bioethical Issues)

(2014) C. Weiner   AMERICAN JOURNAL OF EPIDEMIOLOGY

Factors influencing recruitment to research: qualitative study of the experiences and perceptions of research teams

(2014) Lisa Newington et al.   BMC Medical Research Methodology

Cost-effectiveness of health research study participant recruitment strategies: A systematic review

(2014) Lynn Huynh et al.   Clinical Trials

The hidden harm behind the return of results from personal genome services: a need for rigorous and responsible evaluation

(2014) A. Cecile J.W. Janssens   GENETICS IN MEDICINE

Strategies for Enrollment of African Americans into Cancer Genetic Studies

(2014) Altovise Ewing et al.   JOURNAL OF CANCER EDUCATION

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

(2014) Sarah Scollon et al.   Genome Medicine

Genetic discrimination and life insurance: a systematic review of the evidence

(2013) Yann Joly et al.   BMC Medicine

Patient decisions for disclosure of secondary findings among the first 200 individuals undergoing clinical diagnostic exome sequencing

(2013) Layla Shahmirzadi et al.   GENETICS IN MEDICINE

Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium

(2013) Jonathan S. Berg et al.   GENETICS IN MEDICINE

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

(2013) Sharron Close et al.   JOURNAL OF MEDICAL INTERNET RESEARCH

Patient Autonomy and Incidental Findings in Clinical Genomics

(2013) S. M. Wolf et al.   SCIENCE

Family Physicians’ Awareness and Knowledge of the Genetic Information Non-Discrimination Act (GINA)

(2011) Amanda L. Laedtke et al.   Journal of Genetic Counseling

Genomic research and wide data sharing: Views of prospective participants

(2010) Susan Brown Trinidad et al.   GENETICS IN MEDICINE

The right not to know and preimplantation genetic diagnosis for Huntington's disease

(2009) E Asscher et al.   JOURNAL OF MEDICAL ETHICS