Two large-scale surveys on community attitudes toward an opt-out biobank

American Journal of Medical Genetics, Part A

Volumn 155, Issue 12, 2011, Pages 2982-2990

  Brothers, Kyle B ^a,b   Morrison, Daniel R ^c   Clayton, Ellen W ^a,b  

^a VANDERBILT UNIVERSITY MEDICAL CENTER   (United States)

^b VANDERBILT UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c VANDERBILT UNIVERSITY   (United States)

Author keywords

Biorepository research; Patient perspectives; Research ethics

Indexed keywords

ADULT; AGED; ARTICLE; CLINICAL DATA REPOSITORY; COMMUNITY CARE; CONTROLLED STUDY; FEMALE; GENETIC DATABASE; GENETIC SCREENING; HEALTH SURVEY; HUMAN; INFORMED CONSENT; MALE; MEDICAL RESEARCH; ONLINE SYSTEM; PRIORITY JOURNAL; PUBLIC OPINION; RESIDENTIAL AREA; WRITTEN LANGUAGE;

ACADEMIES AND INSTITUTES; ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; BIOLOGICAL SPECIMEN BANKS; FEMALE; GENETIC RESEARCH; GENETIC TESTING; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PUBLIC OPINION; TRUST; YOUNG ADULT;

EID: 81955161816     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.34304     Document Type: Article

References (14)

1. AAPOR. 2011. Standard definitions: Final dispositions of case codes and outcome rates for surveys. 7th edition. Deerfield, IL: American Association for Public Opinion Research.
2. Brothers KB, Clayton EW, Morrison DR, Pulley JM, Masys DR. 2010. Acceptability of an opt-out pediatric biobank based on electronic medical record and residual blood samples. Vancouver, Canada: Pediatric Academic Societies.
3. Goldman RE, Kingdon C, Wasser J, Clarkt MA, Goldberg R, Papandonatos GD, Hawrot E, Koren G. 2008. Rhode Islanders' attitudes towards the development of a statewide genetic biobank. Personalized Med 5: 339-359.
4. Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C, Corbie-Smith G. 2008. Great expectations: views of genetic research participants regarding current and future genetic studies. Genet Med 10: 193-200. 10.1097/GIM.0b013e318164e4f5.
5. Hoeyer K, Olofsson BO, Mjörndal T, Lynöe N. 2004. Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 32: 224-229.
6. Kettis-Lindblad A, Ring L, Viberth E, Hansson MG. 2006. Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur J Public Health 16: 433-440.
7. Mezuk B, Eaton WW, Zandi P. 2008. Participant characteristics that influence consent for genetic research in a population-based survey: The Baltimore epidemiologic catchment area follow-up. Commun Genet 11: 171-178.
8. Neidich AB, Joseph JW, Ober C, Ross LF. 2008. Empirical data about women's attitudes towards a hypothetical pediatric biobank. Am J Med Genet Part A 146A: 297-304.
9. OHRP. 2008. Guidance on research involving coded private information or biological specimens. Rockville, MD: Office of Human Research Protections.
10. Pentz RD, Billot L, Wendler D. 2006. Research on stored biological samples: Views of African American and White American cancer patients. Am J Med Genet Part A 140A: 733-739.
11. Pulley JM, Brace MM, Bernard GR, Masys DR. 2008. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank 9: 55-65.
12. Pulley JM, Clayton E, Bernard GR, Roden DM, Masys DR. 2010. Principles of human subjects protections applied in an opt-out, de-identified biobank. Clin Transl Sci 3: 42-48.
13. Roden DM, Pulley JM, Basford MA, Bernard GR, Clayton EW, Balser JR, Masys DR. 2008. Development of a large-scale de-identified dna biobank to enable personalized medicine. Clin Pharmacol Therapeut 84: 362-369.
14. Sanner JE, Frazier L. 2007. Factors that influence characteristics of genetic biobanks. J Nurs Scholarsh 39: 25-29.