Recruitment approaches for family studies: Attitudes of index patients and their relatives

IRB Ethics and Human Research

Volumn 26, Issue 4, 2004, Pages 12-18

  Hull, Sara Chandros ^a,b   Glanz, Karen ^c   Steffen, Alana ^d   Wilfond, Benjamin S ^a  

^a NATIONAL HUMAN GENOME RESEARCH INSTITUTE   (United States)

^b NATIONAL INSTITUTES OF HEALTH   (United States)

^c EMORY UNIVERSITY   (United States)

^d UNIVERSITY OF HAWAII CANCER CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ATTITUDE; BEHAVIORAL RESEARCH; BIOMEDICAL AND BEHAVIORAL RESEARCH; COLORECTAL TUMOR; CONFIDENTIALITY; COUNSELING; EMPIRICAL APPROACH; EPIDEMIOLOGY; FAMILY; GENETICS; GENETICS AND REPRODUCTION; HUMAN; HUMAN EXPERIMENT; HUMAN RELATION; INFORMATION PROCESSING; INFORMED CONSENT; METHODOLOGY; PATIENT; PATIENT SELECTION; PSYCHOLOGICAL ASPECT; REFUSAL TO PARTICIPATE; RESEARCH SUBJECT; STATISTICS;

BIOMEDICAL AND BEHAVIORAL RESEARCH; EMPIRICAL APPROACH; GENETICS AND REPRODUCTION;

ATTITUDE; BEHAVIORAL RESEARCH; COLORECTAL NEOPLASMS; CONFIDENTIALITY; COUNSELING; DATA COLLECTION; EPIDEMIOLOGY; FAMILY; GENETIC RESEARCH; HUMAN EXPERIMENTATION; HUMANS; INFORMED CONSENT; PATIENT SELECTION; PATIENTS; PROFESSIONAL-FAMILY RELATIONS; REFUSAL TO PARTICIPATE; RESEARCH DESIGN; RESEARCH SUBJECTS; RESEARCHER-SUBJECT RELATIONS;

EID: 4644228653     PISSN: 01937758     EISSN: None     Source Type: Journal    
DOI: 10.2307/3563699     Document Type: Review

References (12)

1. Bonvicini K. The art of recruitment: The foundation of family and linkage studies of psychiatric illness. Family Process 1998;37:153-165;
2. Preloran H, Browner C, Lieber E. Strategies for motivating latino couples' participation in qualitative health research and their effects on sample construction. American Journal of Public Health 2001;91:1832-1841.
3. Worrall B, Chen D, Meschia J. Ethical and methodological issues in pedigree stroke research. Stroke 2001;32:1242-1249.
4. See ref. 1, Bonvicini 1998.
5. Kreiger N, Ashbury F, Cotterchio M, et al. A qualitative study of subject recruitment for familial cancer research. Annals of Epidemiology 2001;11:219-224;
6. Hadley D, Jenkins J, Dimond E, et al. Genetic counseling and testing in families with hereditary non-polyposis colorectal cancer. Archives of Internal Medicine 2003;163:573-582.
7. Sugarman J, Regan K, Parker B, et al. Ethical ramifications of alternative means of recruiting research participants from cancer registries. Cancer 1999;86:647-651.
8. See ref. 1, Preloran et al. 2001.
9. See ref. 1, Bonvicini 1998.
10. See ref. 2, Worrall et al. 2001.
11. See ref. 4, Hadley et al. 2003.
12. This would require an IRB determination that such approaches are acceptable under the Common Rule at 45 CFR part 46 and the Privacy Rule at 45 CFR parts 160 and 164.