Community leaders’ perspectives on engaging African Americans in biobanks and other human genetics initiatives

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Angel RJ (2011) Agency versus structure: genetics, group membership, and a new twist on an old debate. Soc Sci Med 73:632–635

Beeson D, Duster T (2002) African American perspectives on genetic testing. In: Alper J, Ard C, Asch A, Beckwith J, Conrad P, Geller LN (eds) The double-edged helix: social implications of genetics in a diverse society. The Johns Hopkins University Press, Baltimore, pp 151–172

Bliss C (2011) Racial taxonomy in genomics. Soc Sci Med 73:1019–1027

Bonham VL, Citrin T, Modell SM, Franklin TH, Bleicher EW, Fleck IM (2009) Community-based dialogue: engaging communities of color in the United States’ genetics policy conversation. J Health Polit Policy Law 34:325–359

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101

Buseh AG, Underwood SM, Stevens PE, Townsend L, Kelber ST (2012). Nursing Outlook, 2012 Dec 4. pii: S0029-6554(12)00294-1. doi: 10.1016/j.outlook.2012.10.004

Bussey-Jones J, Garrett J, Henderson G, Moloney M, Blumenthal C, Corbie-Smith G (2010) The role of race and trust in tissue/blood donation for genetic research. Genet Med 12:116–121

Caulfield T (2011) The biobanking quandary: getting and withdrawing consent. Harv Health Policy Rev 12:21–24

Caulfield TA, Knoppers BM, Gold ER, Snheremeta LE, Bridge PJ (2003) Genetic technologies, health care policy and the patent bargain. Clin Genet 63:15–18

Center for Assessment and Policy Development (2005) Evaluation tools for racial equity. Retrieved April 24, 2013 from: http://www.evaluationtoolsforracialequity.org/index.htm

Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayvers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Intern Med 14:537–546

Freimuth VS, Quinn SC, Thomas SB, Cole G, Zook E, Duncan T (2001) African Americans’ views on research and the Tuskegee syphilis study. Soc Sci Med 52:797–808

Green ED, Guyer MS, National Human Genome Research Institute (2011) Charting a course for genomic medicine from base pairs to bedside. Nature 470(7333):204–213

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Haddow G, Laurie G, Cunningham-Burley S, Hunter KG (2007) Tackling community concerns about commercialization and genetic research: a modest interdisciplinary proposal. Soc Sci Med 64:272–282

Hall MA, Dugan E, Zheng B, Mishra AK (2001) Trust in physicians and medical institutions: what is it, can it be measured, and does it matter? Milbank Q Rep 79(4):613–639

Halverson CME, Ross LF (2012) Engaging African-Americans about biobanks and the return of research. J Community Genet 3:275–283

Hannah L (2000) Immortality, in vitro: a history of the HeLa cell line. In: Brodwin P (ed) Biotechnology and culture: bodies, anxieties, ethics. Bloomington: Indiana University Press, pp 53–74

Hartz SM, Johnson EO, Saccone NL, Hatsukami D, Breslau N, Bierut LJ (2011) Inclusion of African Americans in genetic studies: what is the barrier? Am J Epidemiol 174(3):336–344

Hiratsuka V, Brown J, Dillard D (2012) Views of biobanking research among Alaska native people: the role of community context. Prog Commun Health Partnership Res Educ Act 6(2):131–139

Jones JH (1992) Bad blood: the Tuskegee syphilis experiment New and expanded edition. The Free Press, New York

Jones NG, Harris JJ (2011) African Americans and genetic research, risk versus benefit: Implications for the profession of social work. Soc Work Public Health 26(4):380–391

Khoury MJ, Gwinn M, Bowen S, Dotson WD (2012) Beyond base pairs to bedside: a population perspective on how genomics can improve health. Am J Public Health 102(1):34–37

Kjellstrom T, Mercado S, Sami M, Havemann K, Iwao S (2007) Achieving health equity in urban settings. J Urban Health Bull N Y Acad Med 84(1):i1–i6

Krueger R, Casey M (2009) Focused groups: a practical guide for applied research, 4th edn. Sage, Los Angeles

LaVeist TA, Gaskin DJ, Richard P (2009) The economic burden of health inequalities in the United States. Center for Political and Economic Studies, Washington, DC. Retrieved from: www.jointcenter.org . http://www.jointcenter.org/hpi/sites/all/files/Burden_Of_Health_FINAL_0.pdf

Lederer SE (2003) Children as guinea pigs: historical perspectives. Account Res: Pol Qual Assur 10(1):1–16

Lederer SE (2005) Experimentation on human beings. Organ Am Hist Mag Hist 19(5):20–22

Lemke AA, Halverson C, Ross LF (2012) Biobank participation and returning research results: perspectives from a deliberative engagement in south side Chicago. Am J Med Genet Part A 158A:1029–1037

Losow MB (2005) Personalized medicine and race-based drug development: addressing minority health care disparities in an ethically charged area. J Civ Rights Econ Dev 1(20):15–27

Martinez LS, Rubin CL, Russell B, Leslie LK, Brugge D (2011) Community conceptualizations of health: implications for transdisciplinary team science. Clin Trans Sci 4(3):163–167

McDonald JA, Frances BK, Weathers B et al (2012) Understanding participation by African Americans in cancer genetics research. J Natl Med Assoc 104(1 & 2):324–330

Miller DT, Ridker PM, Libby P, Kwiatkowski DJ (2007) Atherosclerosis: the path from genomics to therapeutics. J Am Coll Cardiol 49(15):1589–1599

Mills EJ, Seely D, Rachlis B, Griffith L, Wu P, Wilson K, Ellis P, Wright JR (2006) Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. Lancet Oncol 7(2):141–148

Musa D, Schulz R, Harris R, Silverman M, Thomas SB (2009) Trust in the health care system and the use of preventive health services by older black and white adults. Am J Public Health 99(7):1293–1299

O’Daniel JM, Rosanbalm KD, Boles L, Tindall GM, Livingston TM, Haga SB (2012) Enhancing geneticists’ perspectives of the public through community engagement. Genet Med 14(2):243–249

QSR International (2013) NVivo 9.0 qualitative software package. QSR International, Burlington. Retrieved from: http://www.qsrinternational.com/default.aspx . February 21, 2013

Royal CD, Dunston GM (2004) Changing the paradigm from ‘race” to human genome variation. Nat Genet Suppl 36(11):S5–S7

Rugnetta MJ, Desai K (2011) Addressing race and genetics: health disparities in the age of personalized medicine. Sci Prog 1–23

Russell E, Robinson DHZ, Thompson NJ, Perryman JP, Arriola KRJ (2012) Distrust in the health care system and organ donation intentions among African Americans. J Community Health 37(1):40–47

Scott CT, Caulfield T, Borgelt E, Illes J (2012) Personal medicine—the new banking crisis. Nat Biotechnol 30(2):141–147

Sellars B, Garza MA, Fryer CS, Thomas SB (2010) Utilization of health care services and willingness to participate in future medical research: the role of race and social support. J Natl Med Assoc 102(9):776–786

Shavers VL, Lynch CF, Burmeister LF (2000) Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc 92:563–572

Shoff C, Yang TC (2012) Untangling the associations among distrust, race, and neighborhood social environment: a social disorganization perspective. Soc Sci Med 74(9):1342–1352

Siminoff LA, Arnold R (1999) Increasing organ donation in the African-American community: altruism in the face of an untrustworthy system. Ann Intern Med 130(7):607–609

Skinner CS, Schildkraut JM, Calingaert B, Hoyo C, Crankshaw SS, Fish L, Susswein L, Jasper C, Reid L (2008) Factors associated with African Americans’ enrollment in a national cancer genetic registry. Community Genet 11:224–233

Skloot R (2010) The immortal life of Henrietta lacks. Thorndike, New York

Skloot R (2013) The immortal life of Henrietta Lacks, the sequel. New York Times, March 23, 2013. Retrieved April 24, 2013 from: http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?pagewanted=all&_r=0

Stevens PE (1996) Focus groups: collecting aggregate level data to understand community health phenomena. Public Health Nurs 13(3):170–176

Terry SF, Christensen KD, Metosky S, Rudofsky G, Deignan KP, Martinez H et al (2012) Community engagement about genetic variation research. Popul Health Manag 15(2):78–89

The Wisconsin Genomics Initiative (WGI) (2008) Retrieved from: http://www.marshfieldclinic.org/patients/?page=genomics

Thomas SB, Quinn SC (2008) Poverty and elimination of urban health disparities. Ann N Y Acad Sci 1136:111–125

Washington HA (2006) Medical apartheid: the dark history of medical experimentation on Black Americans from colonial times to the present. Random House, New York

Watkins H, Farrall M (2006) Genetic susceptibility to coronary artery disease: from promise to progress. Natl Rev Genet 7(3):163–173

White RM (2005) Misinformation and misbeliefs in the Tuskegee study of untreated syphilis fuel mistrust in the healthcare system. J Natl Med Assoc 97(11):1566–1572