Background Reading:

 

  • Anderson, Ronald M. "Revisiting the Behavioral Model and Access to Health Care: Does it Matter?" Journal of Health Social Behavior." March 1995; 36: 1-10.
  • Andrews, J. O., Bentley, G., et al. "Using Community-Based Participatory Research to Develop a Culturally Sensitive Smoking Cessation Intervention with Public Housing Neighborhoods." Ethnicity & Disease, 17(2), 331-7.
  • Bahn, A. et al "Grand Challenges in Global Health: Engaging Civil Society Organizations in Biomedical Research in Developing Countries" 2007. PLosMed 4 (9), e272
  • Berndtson, K. et al "Grand Challenges in Global Health: The Ethical, Social, and Cultural Program Based on Key Informant Perspectives " 2007. PLosMed 4 (9), e268
  • Bookman EB, Langhorne AA, et al. "Reporting Genetic Results in Research Studies: Summary and Recommendations of an NHLBI Working Group." Am Journal of Medical Genetics, 2006, May 15; 140 (10) : 1033-40.
  • Boyer, B., Mohatt, G.V., et al, "Sharing Results from Complex Disease Genetic Studies: A Community Based Participatory Research Approach." International Journal of Circumpolar Health, 2007, 66:1, 19-30.
  • Burchard EG et al. "The Importance of Race and Ethnic Background in Biomedical Research and Clinical Practice." New England Journal of Medicine. 2003, Mar 20;348(12):1170-5.
  • Burke, W., Pinsky, L. and Press, N. "Catagorizing Genetic Tests to Identify their Ethical, Legal, and Social Implications." American Journal of Medical Genetics 2001, 106:233-240.
  • Brosco, Jeffrey P., and Feudtner, Chris. "Growth Attenuation: A Diminutive Solution to a Daunting Problem." Editorial in Arch Pediatr Adolesc Med. 2006 Oct;160:1077-1078.
  • Carrasquillo, O. and Chadiha, L.A. " Development of Community-Based Partnerships in Minority Aging Research." Ethnicity & Disease, 17 (1 Supp 1 ), S3-5.
  • Chokshi DA, Thera MA, Parker M, Diakite M, Makani J, et al. (2007) "Valid Consent for Genomic Epidemiology in Developing Countries." PLoS Med 4(4): e95
  • Collins et al. "A Vision for the Future of Genomics Research; A Blueprint for the Genomic era." Nature 2003 (422); 835-847
  • Condit, Celeste. "How Geneticists can help reporters get their story right." Nature 2007. October, (8); 815-820.
  • Cooper RS, Kaufman JS, Ward R. "Race and Genomics." New England Journal of Medicine. 2003. Mar 20;348(12):1166-70.
  • d'Agincourt-Canning, L., (2006) "A gift or a yoke? Women's and men's responses to genetic risk information BRCA1 and BRCA2 testing." Clinical Genetics 70 (6); 462–472.
  • Dupuis, J., and O'Donnell, C. "Interpreting Results of Large Scale Genetic Asociation Studies." JAMA 2007. Feb 7; 297(5): 525-531
  • Farquhar, S., Samples, J., et al. "Promoting the Occupational Health of Indigenous Farmworkers" Journal of Immigrant & Minority Health, (epub, ahead of print).
  • Flicker, S. and Saven, B. "A Snapshot of Community-Based Research in Canada." Toronto. ON Wellesley Institute: 42.
  • Foster, Morris W., and Sharp, Richard P. " Share and share alike: deciding how to distribute the scientific and social benefits of genomic data." Nature Reviews Genetics. August 2007; 633-638.
  • Garrison, Louis P. and Finley-Austin, M.J. "Linking pharmacogenetics-based diagnostics and drugs for personalized medicine."Health Aff (Millwood). 2006 Sep-Oct;25(5):1281-90.
  • George, M. A., Daniel, M., et al. "Appraising and Funding Participatory Research in Health Promotion." International Quarterly of Community Health Education, 26(2), 171-87.
  • Gunther, Daniel F., and Diekema " Attenuating Growth in Children with Profound Developmental Disability." Arch Pediatr Adolesc Med. 2006 Oct;160:1013-1017.
  • Hall MJ, Opolade OI. Disparities in genetic testing: thinking outside the BRCA box. J Clin Oncol. 2006 May 10;24(14):2197-203.
  • Harmon, A. "DNA Gatherers Hit Snag, Tribes Don't Trust Them." New York Times, Dec. 10, 2006.
  • Henrikson, NB; Veenstra, DL, Burke, W., "Pharmacogenomic tests: more information than you need to know?" Poster presented at the April 2006 meeting of the American College of Medical Genetics.
  • Hewitt, G., Draper, A., et al. "Improving Food Provision in a Guyanese Home for the Elderly: A Participatory Approach." Public Health Nutrition, 10(6), 552-8.
  • Jaja, C et al. , "The Prevalence of P450 Drug Metabolizing Enzyme Polymorphisms in Native American Populations". Poster presented at the April 2006 meeting of the American College of Medical Genetics.
  • Juengst, Eric T. "Community Engagement in Genetic Research: The "Slow Code" of Research Ethics?" Populations & Genetics: Legal and Socio-Legal Perspectives 2003. Printed in the Netherlands.
  • Kelly, C. M., Baker, E.A., et al. "Translating Research into Practice: Using Concept Mapping to Determine Locally Relevent Intervention Strategies to Increase Physical Activity." Evaluation and Program Planning, 30(3), 282-93.
  • Ling, T. et al. "Pharmacogenetics and Uncertainty: Implications for Policy Makers." Stud Hist Philos Biol Biomed Sci. 2006 Sep;37(3):533-49. Epub 2006 Aug 23.
  • Lowerance, William W., Collins, Francis S. "Identifiability in Genomic Research" Science. 2007. Aug 3; 317: 600-602.
  • Lurie, N. "Health Dispartities -- Less Talk, More Action." New England Journal of Medicine. 2005. Aug 18;353(7):727-9.
  • Malone, Ruth. et al., "'It's like Tuskegee in Reverse': A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research." Am J Public Health, 2006 Nov; 96(11): 1914-1919.
  • Marshall-Lucette, S., Corbett, S. K., et al. "Developing Locally Based Research Capacity in Uganda." International Nursing Review, 54(3), 227-233.
  • Myers, M. et al., "Genetic Testing for susceptibility to breast and ovarian cancer: Evaluating the impact of a direct-to-consumer marketing campaign on physicians' knowledge and practices." Genetics in Medicine 2006:8(6):361-370.
  • Norris, K.C., Brusuelas, R., at al. "Partnering with Community-Based Organizations: An Academic Institution's Evolving Perspective." Ethnicity & Disease, 17 (1Supp1), S27-32.
  • Phillips, Karen A. "The Intersection of Biotechnology and Pharmacogenetics: Health Policy Implications." Health Affairs 2006: Sept/Oct: 25 (5) 1271-1280.
  • Pullman D., Hodgkinson K. "Genetic knowledge and moral responsibility: ambiguity at the interface of genetic research and clinical practice." Clin Genet 2006: 69: 199-203.
  • Ramsey, S., Veenstra, D. et al. "Toward Evidence-based Assessment for Coverage and Reimbursement of Laboratory-Based Diagnostic and Genetic Tests." Am J Manag Care. 2006 Apr;12 (4):197-202.
  • Renegar et al, "Returning Genetic Research Results to Individuals: Points to Consider. Bioethics, Volume 20 Number 1. Feb. 2006, 24-36.
  • Sankar, P. et al. "Genetic Research and Health Disparties." JAMA. 2004 Jun 23;291(24):2985-9.
  • Shields, A. et al. "The Use of Race Variables in Genetic Studies of Complex Traits and the Goal of Reducing Health Disparities." Am Psychol. 2005 Jan; 60(1):77-103.
  • Singer, Peter. et al. "Grand Challenges in Global Health: The Ethical, Social, and Cultural Program" 2007. PLosMed 4 (9), e265
  • Sterling, R., Henderson, G.E., Gorbie-Smith, G., " Public Willingness to Participate in and Public Opinions about Genetic Variation Research: A Review of the Literature." Am J Public Health, 2006 Nov; 96(11):1971-8
  • Stevens, J. "Racial Meanings and Scientific Methods: Changing Policies for NIH Sponsored Publications Reporting Human Variation." Journal of Health Politics, Policy and Law 2003 28(6): 1033-1088
  • Stonington S, Holmes SM. "Social Medicine in the Twenty-First Century." PLoS Med, 2006, 3(10): e445 DOI.
  • Tano, M. " Interrlationships among Native Peoples, Genetic Research, and the Landscape: Need for Further Research into Ethical, Legal, and Social Issues." Journal of Law, Medicine and Ethics, Summer 2006, 301-309.
  • Terry, S.F., Terry, P.F., et al, "Advocacy Groups as Research Organizations: The PXE International Example." Nat Rev Genet, 2007, Feb 8;(2) 157-164.
  • Tindana, Paulina, et al. "Grand Challenges in Global Health: Community Engagement in Research in Developing Countries" 2007. PLosMed 4 (9), e273
  • UyBico, S.J., Pavel, S., et al. "Recruiting Vulnerable Populations into Research: A Systematic Review of Recruitment Interventions." Journal of General Internal Medicine, 22(6), 852-863.
  • Wadman, N. "Geneticists Struggle for Consensus on Place for 'Race" Nature, 2004 Oct 28;431(7012):1026.

 

 


   

,Dana Gold, Research Coordinator
Phone: 206.616.4979 Fax: 206.616.4978

Center for Genomics & Healthcare Equality
1914 N. 34th Street, Suite 106, Seattle WA 98103