Parental Perspectives on a Pediatric Human Non-Subjects Biobank

AJOB Primary Research

Volumn 3, Issue 3, 2012, Pages 21-29

  Brothers, Kyle B ^a   Clayton, Ellen Wright ^a  

^a VANDERBILT UNIVERSITY MEDICAL CENTER   (United States)

Author keywords

biorepository research; genomic research; pediatric research ethics

Indexed keywords

EID: 84862635901     PISSN: 21507716     EISSN: 21507724     Source Type: Journal    
DOI: 10.1080/21507716.2012.662576     Document Type: Article

References (13)

1. Brothers, K. B. 2011. Biobanking in pediatrics: The human nonsubjects approach. Personalized Medicine, 8(1): 71-79.
2. Brothers, K. B. and Clayton, E. W. 2010. 'Human non-subjects research': Privacy and compliance. American Journal of Bioethics, 10(9): 15-17.
3. Brothers, K. B., Morrison, D. R. and Clayton, E. W. 2011. Two large-scale surveys on community attitudes toward an opt-out biobank. American Journal of Medical Genetics Part A, 155(12): 2982-2990. doi: 10.1002/ajmg.a.34304
4. Gurwitz, D., Fortier, I., Lunshof, J. E. and Knoppers, B. M. 2009. Children and population biobanks. Science, 325(5942): 818
5. Hens, K., Nys, H., Cassiman, J. J. and Dierickx, K. 2011a. Risks, benefits, solidarity: A framework for the participation of children in genetic biobank research. Journal of Pediatrics, 158(5): 842-848.
6. Hens, K., Nys, H., Cassiman, J. J. and Dierickx, K. 2011b. The storage and use of biological tissue samples from minors for research: A focus group study. Public Health Genomics, 14(2): 68-76.
7. Jenkins, M. M., Reed-Gross, E., Rasmussen, S. A., Barfield, W. D., Prue, C. E., Gallagher, M. L. and Honein, M. A. 2009. Maternal attitudes toward DNA collection for gene-environment studies: A qualitative research study. American Journal of Medical Genetics Part A, 149A(11): 2378-2386.
8. Neidich, A. B., Joseph, J. W., Ober, C. and Ross, L. F. 2008. Empirical data about women's attitudes towards a hypothetical pediatric biobank. Amerian Journal of Medical Genetics Part A, 146(3): 297-304.
9. Office of Human Research Protections. 2008. Guidance on research involving coded private information or biological specimens, Rockville, MD: Office of Human Research Protections.
10. Pope, C. and Mays, N. 2006. Qualitative research in health care, Malden, MA: Blackwell Publishing/BMJ Books.
11. Pulley, J. M., Brace, M. M., Bernard, G. R. and Masys, D. R. 2008. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell and Tissue Banking, 9(1): 55-65.
12. Roden, D. M., Pulley, J. M.Basford, M. A. 2008. Development of a large-scale de-identified DNA biobank to enable personalized medicine. Clinical Pharmacology & Therapeutics, 84(3): 362-369.
13. Steinbrook, R. 2009. Opportunities and challenges for the NIH-An interview with Francis Collins. New England Journal of Medicine, 361(14): 1321-1323.