Title |
Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients
|
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Published in |
Genome Medicine, September 2014
|
DOI | 10.1186/s13073-014-0069-3 |
Pubmed ID | |
Authors |
Sarah Scollon, Katie Bergstrom, Robin A Kerstein, Tao Wang, Susan G Hilsenbeck, Uma Ramamurthy, Richard A Gibbs, Christine M Eng, Murali M Chintagumpala, Stacey L Berg, Laurence B McCullough, Amy L McGuire, Sharon E Plon, D Williams Parsons |
Abstract |
Effectively educating families about the risks and benefits of genomic tests such as whole exome sequencing (WES) offers numerous challenges, including the complexity of test results and potential loss of privacy. Research on best practices for obtaining informed consent (IC) in a variety of clinical settings is needed. The BASIC3 study of clinical tumor and germline WES in an ethnically diverse cohort of newly diagnosed pediatric cancer patients offers the opportunity to study the IC process in the setting of critical illness. We report on our experience for the first 100 families enrolled, including study participation rates, reasons for declining enrollment, assessment of clinical and demographic factors that might impact study enrollment, and preferences of parents for participation in optional genomics study procedures. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Germany | 1 | 20% |
Australia | 1 | 20% |
Unknown | 3 | 60% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 4 | 80% |
Scientists | 1 | 20% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 2 | 3% |
United States | 1 | 1% |
Philippines | 1 | 1% |
Unknown | 72 | 95% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 17 | 22% |
Student > Master | 9 | 12% |
Student > Bachelor | 9 | 12% |
Student > Doctoral Student | 5 | 7% |
Other | 5 | 7% |
Other | 15 | 20% |
Unknown | 16 | 21% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 24 | 32% |
Biochemistry, Genetics and Molecular Biology | 8 | 11% |
Agricultural and Biological Sciences | 7 | 9% |
Social Sciences | 5 | 7% |
Nursing and Health Professions | 4 | 5% |
Other | 10 | 13% |
Unknown | 18 | 24% |