Fulfilling Ethical Responsibility: Moving Beyond the Minimal Standards of Protecting Human Subjects from Research Harm

被引:21
作者
Hebert, James R. [1 ]
Satariano, William A. [2 ]
Friedman, Daniela B. [1 ]
Armstead, Cheryl A. [1 ]
Greiner, Allen [3 ]
Felder, Tisha M. [1 ]
Coggins, Thomas A. [1 ]
Tanjasiri, Sora [4 ]
Braun, Kathryn L. [5 ,6 ]
机构
[1] Univ S Carolina, Arnold Sch Publ Hlth, SCCDCN, Columbia, SC 29208 USA
[2] Univ Calif Berkeley, Alameda Cty Network Program Reducing Canc Dispar, Berkeley, CA 94720 USA
[3] Univ Kansas, KCCDN, Lawrence, KS 66045 USA
[4] Calif State Univ, WINCART, Washington, DC 20001 USA
[5] Papa Ola Lokahi, Imi Hale Native Hawaiian Canc Network, Honolulu, HI 96813 USA
[6] Univ Hawaii Manoa, Off Publ Hlth Studies, Honolulu, HI 96822 USA
关键词
Community-based participatory research; research ethics; institutional review boards; human subjects; community beneficence; COMMUNITY NETWORKS PROGRAM; PARTICIPATORY RESEARCH; HEALTH DISPARITIES; CANCER MORTALITY; SOUTH-CAROLINA; INTERSECTION; CHALLENGES; PRINCIPLES; CAPACITY; ADDRESS;
D O I
10.1353/cpr.2015.0021
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Problem: Rules for protecting human subjects, in place federally since 1974, have focused primarily on guarding against placing research subjects at social, physical, or psychological risk or violating their privacy and confidentiality. Nevertheless, high-risk communities are routinely subjected to "sins of omission," which limit access to potentially significant research opportunities and result in the absence of studies that could confer high degree of community beneficence. Purpose of Article: To describe "sins of omission" and provide examples from the Community Networks Program Centers (CNPC) to illustrate how community-based participatory research (CBPR) can prevent them. Key Points: CBPR is an effective antidote to sins of omission. Activities undertaken by the CNPCs illustrate how adherence to CBPR principles can improve research access and outcomes. Conclusions: By working with community members as partners, we expand the concept of beneficence to include "community beneficence," thus reducing the probability of "sins of omission."
引用
收藏
页码:41 / 50
页数:10
相关论文
共 39 条
[1]   Racial disparities in breast cancer mortality in a multiethnic cohort in the Southeast [J].
Adams, Swann Arp ;
Butler, William M. ;
Fulton, Jeanette ;
Heiney, Sue P. ;
Williams, Edith M. ;
Delage, Alexandria F. ;
Khang, Leepao ;
Hebert, James R. .
CANCER, 2012, 118 (10) :2693-2699
[2]   Building native Hawaiian capacity in cancer research and programming - A legacy of 'Imi Hale [J].
Braun, Kathryn L. ;
Tsark, Joann U. ;
Santos, LorrieAnn ;
Aitaoto, Nia ;
Chong, Clayton .
CANCER, 2006, 107 (08) :2082-2090
[3]   Reducing Cancer Screening Disparities in Medicare Beneficiaries Through Cancer Patient Navigation [J].
Braun, Kathryn L. ;
Thomas, William L., Jr. ;
Domingo, Jermy-Leigh B. ;
Allison, Amanda L. ;
Ponce, Avette ;
Kamakana, P. Haunani ;
Brazzel, Sandra S. ;
Aluli, N. Emmett ;
Tsark, JoAnn U. .
JOURNAL OF THE AMERICAN GERIATRICS SOCIETY, 2015, 63 (02) :365-370
[4]   Operationalization of Community-Based Participatory Research Principles: Assessment of the National Cancer Institute's Community Network Programs [J].
Braun, Kathryn L. ;
Nguyen, Tung T. ;
Tanjasiri, Sora Park ;
Campbell, Janis ;
Heiney, Sue P. ;
Brandt, Heather M. ;
Smith, Selina A. ;
Blumenthal, Daniel S. ;
Hargreaves, Margaret ;
Coe, Kathryn ;
Ma, Grace X. ;
Kenerson, Donna ;
Patel, Kushal ;
Tsark, JoAnn ;
Hebert, James R. .
AMERICAN JOURNAL OF PUBLIC HEALTH, 2012, 102 (06) :1195-1203
[5]   Cancer Patient Navigator Tasks across the Cancer Care Continuum [J].
Braun, Kathryn L. ;
Kagaiva-Singer, Marjorie ;
Holden, Alan E. C. ;
Burhansstipanov, Linda ;
Tran, Jacqueline H. ;
Seals, Brenda F. ;
Corbie-Smith, Giselle ;
Tsark, JoAnn U. ;
Harjo, Lisa ;
Foo, Mary Anne ;
Ramirez, Amelie G. .
JOURNAL OF HEALTH CARE FOR THE POOR AND UNDERSERVED, 2012, 23 (01) :398-413
[6]  
Braun Kathryn L, 2008, Prog Community Health Partnersh, V2, P329, DOI 10.1353/cpr.0.0037
[7]   Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study [J].
Brown, Phil ;
Morello-Frosch, Rachel ;
Brody, J. G. ;
Altman, Rebecca Gasior ;
Rudel, Ruthann A. ;
Senier, Laura ;
Perez, Carla ;
Simpson, Ruth .
ENVIRONMENTAL HEALTH, 2010, 9
[8]   Racial disparities in colorectal cancer incidence by type 2 diabetes mellitus status [J].
Cavicchia, Philip P. ;
Adams, Swann Arp ;
Steck, Susan E. ;
Hussey, James R. ;
Liu, Jihong ;
Daguise, Virginie G. ;
Hebert, James R. .
CANCER CAUSES & CONTROL, 2013, 24 (02) :277-285
[9]   A Systematic Review of Community-Based Participatory Research to Enhance Clinical Trials in Racial and Ethnic Minority Groups [J].
De Las Nueces, Denise ;
Hacker, Karen ;
DiGirolamo, Ann ;
Hicks, LeRoi S. .
HEALTH SERVICES RESEARCH, 2012, 47 (03) :1363-1386
[10]  
Domingo Jermy B, 2011, Hawaii Med J, V70, P257