Why Patients Decline Genomic Sequencing Studies: Experiences from the CSER Consortium-Reference-Cited by-同舟云学术

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

Published:2018-03-01 Issue:5 Volume:27 Page:1220-1227
ISSN:1059-7700
Container-title:Journal of Genetic Counseling
language:en
Short-container-title:J Genet Counsel

Author:

Amendola Laura M.,Robinson Jill O.,Hart Ragan,Biswas Sawona,Lee Kaitlyn,Bernhardt Barbara A.,East Kelly,Gilmore Marian J.,Kauffman Tia L.,Lewis Katie L.,Roche Myra,Scollon Sarah,Wynn Julia,Blout Carrie

Funder

National Human Genome Research Institute

Publisher

Wiley

Subject

Genetics(clinical)

Link

http://link.springer.com/article/10.1007/s10897-018-0243-7/fulltext.html

Reference32 articles.

1. Armstrong, K., Weber, B., FitzGerald, G., Hershey, J. C., Pauly, M. V., Lemaire, J., Subramanian, K., & Asch, D. A. (2003). Life insurance and breast cancer risk assessment: adverse selection, genetic testing decisions, and discrimination. American Journal of Medical Genetics. Part A, 120a(3), 359–364. https://doi.org/10.1002/ajmg.a.20025 .

2. Asscher, E., & Koops, B. J. (2010). The right not to know and preimplantation genetic diagnosis for Huntington’s disease. Journal of Medical Ethics, 36(1), 30–33. https://doi.org/10.1136/jme.2009.031047 .

3. Berg, J. S., Amendola, L. M., Eng, C., Van Allen, E., Gray, S. W., Wagle, N., et al. (2013). Processes and preliminary outputs for identification of actionable genes as incidental findings in genomic sequence data in the Clinical Sequencing Exploratory Research Consortium. Genetics in Medicine, 15(11), 860–867. https://doi.org/10.1038/gim.2013.133 .

4. Bombard, Y., Penziner, E., Suchowersky, O., Guttman, M., Paulsen, J. S., Bottorff, J. L., & Hayden, M. R. (2008). Engagement with genetic discrimination: concerns and experiences in the context of Huntington disease. European Journal of Human Genetics, 16(3), 279–289. https://doi.org/10.1038/sj.ejhg.5201937 .

5. Close, S., Smaldone, A., Fennoy, I., Reame, N., & Grey, M. (2013). Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome. Journal of Medical Internet Research, 15(3), e48. https://doi.org/10.2196/jmir.2286 .

Cited by 38 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Understanding what drives genetic study participation: Perspectives of patients, carers, and relatives;Pulmonary Circulation;2024-01

2. Precision medicine and the ethics of electronic health records and genomics;Comprehensive Precision Medicine;2024

3. Combined bioinformatic and splicing analysis of likely benign intronic and synonymous variants reveals evidence for pathogenicity;Genetics in Medicine Open;2024

4. Combined Bioinformatic and Splicing Analysis of Likely Benign Intronic and Synonymous Variants Reveals Evidence for Pathogenicity;2023-10-31

5. Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal;Annual Review of Genomics and Human Genetics;2023-08-25