Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community
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The success of biobanking research relies on the willingness of the public to provide biological and sociological information, donate tissue samples, and complete psychosocial questionnaires. Medical advances made through biobanking research have limited reach if tissues are not obtained from a diverse sample of individuals. Within, we describe the process of transitioning a small group of Hispanic community members who met regularly into a more formal Hispanic Community Advisory Board (HCAB) for the Genotype-Tissue Expression (GTEx) project. The sole purpose of the HCAB was to provide input and feedback on GTEx and, specifically, how researchers can best address the concerns of the Hispanic community related to tissue donation. This initial purpose was adapted to be responsive to the HCAB’s request to include educating others in the Hispanic community who were not a part of the advisory board about genomic biobanking. While HCAB members’ knowledge of biobanking was limited, a strong need for culturally tailored information about the impact of biobanking medical discoveries and their potential benefit to the Hispanic community was expressed. The HCAB’s feedback guided revisions to GTEx study documents to specifically address concerns about language use, clarity, and context including the need for consent forms to address cultural concerns and fears. HCAB members also collaborated on the development of a walk-through exhibition which provided a visual, narrative-based explanation of GTEx and the process of tissue donation for research and biobanking purposes. The HCAB demonstrated the value of including community participation in scientific research projects, for both scientists and lay communities, and underscored the importance of developing community engagement approaches that are adaptable and responsive to community needs. Our experience with the HCAB serves as exemplar for a unique paradigm of community inclusiveness and education in research.
KeywordsTissue banks Genomics Hispanic Americans Community participation
The ELSI project would like the acknowledge the work of the GTEx OPO partners: Gift of Life in Philadelphia, PA; Center for Organ Recovery and Education in Pittsburgh, PA; LifeNet Health in Virginia Beach, VA; Washington Regional Transplant Center in Washington, DC; and LifeGift in Houston, TX. The authors would also like to recognize the family decision makers who participated in the ELSI project. Special thanks to the members of the GTEx Hispanic Community Advisory Board: Liliana Castillo, Lydia English, Maria Espiritu, Graciela Gomez, Jaime Jaime, Marianela Macedo, Juliana Moreno, Emperatriz Navarete, Vivian Robles, Maria Sanchez, and Sandra Torres.
This work was supported by the National Institutes of Health (HHSN261200800001E—Leidos Prime contract with NCI) and the National Disease Research Interchange (10XS170).
Compliance with ethical standards
The ELSI sub-study protocol, including engagement of the CABs, was approved by the Institutional Review Boards at Virginia Commonwealth University and Temple University.
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
- Bonham VL, Citrin T, Modell SM, Franklin TH, Bleicher EW, Fleck LM (2009) Community-based dialogue: engaging communities of color in the United States’ genetics policy conversation. J Health Polit Policy Law 34:325–359. https://doi.org/10.1215/03616878-2009-009 CrossRefPubMedPubMedCentralGoogle Scholar
- Campbell MK, Hudson MA, Resnicow K, Blakeney N, Paxton A, Baskin M (2007) Church-based health promotion interventions: evidence and lessons learned. Annu Rev Public Health 28:213–234. https://doi.org/10.1146/annurev.publhealth.28.021406.144016 CrossRefPubMedGoogle Scholar
- Carithers LJ, Ardlie K, Barcus M, Branton PA, Britton A, Buia SA, Compton CC, DeLuca DS, Peter-Demchok J, Gelfand ET, Guan P, Korzeniewski GE, Lockhart NC, Rabiner CA, Rao AK, Robinson KL, Roche NV, Sawyer SJ, Segre AV, Shive CE, Smith AM, Sobin LH, Undale AH, Valentino KM, Vaught J, Young TR, Moore HM, Consortium GT (2015) A novel approach to high-quality postmortem tissue procurement: the GTEx project. Biopreserv Biobank 13:311–319. https://doi.org/10.1089/bio.2015.0032 CrossRefPubMedPubMedCentralGoogle Scholar
- Colby SL, Ortman JM (2015) Projection of the size and composition of the U.S. population: 2014 to 2060. United States Census Bureau. https://www.census.gov/content/dam/Census/library/publications/2015/demo/p25-1143.pdf. Accessed 27 Nov 2017
- Den Broeder L, Devilee J, Van Oers H, Schuit AJ, Wagemakers A (2016) Citizen science for public health. Health Promot Int daw086. https://doi.org/10.1093/heapro/daw086
- Erwin DO, Moysich K, Kiviniemi MT, Saad-Harfouche FG, Davis W, Clark-Hargrave N, Ciupak GL, Ambrosone CB, Walker C (2013) Community-based partnership to identify keys to biospecimen research participation. J Cancer Educ 28:43–51. https://doi.org/10.1007/s13187-012-0421-5 CrossRefPubMedPubMedCentralGoogle Scholar
- Genotype-Tissue Expression Project (GTEx) (2015) GTEx donor screening worksheet dataset (unpublished). Biospecimen Source Site, National Disease Research Interchange, PhiladelphiaGoogle Scholar
- Gordon EJ, Feinglass J, Carney P, Ramirez D, Olivero M, O’Connor K, MacLean J, Brucker J, Caicedo JC (2015) An interactive, bilingual, culturally targeted website about living kidney donation and transplantation for Hispanics: development and formative evaluation. JMIR Res Protoc 4:e42. https://doi.org/10.2196/resprot.3838 CrossRefPubMedPubMedCentralGoogle Scholar
- Luque JS, Quinn GP, Montel-Ishino FA, Arevalo M, Bynum SA, Noel-Thomas S, Wells KJ, Gwede CK, Meade CD, Tampa Bay Community Cancer Network P (2012) Formative research on perceptions of biobanking: what community members think. J Cancer Educ 27:91–99. https://doi.org/10.1007/s13187-011-0275-2 CrossRefPubMedPubMedCentralGoogle Scholar
- McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N, Marshfield Clinic PCAG (2008) Community consultation and communication for a population-based DNA biobank: the Marshfield clinic personalized medicine research project. Am J Med Genet A 146A:3026–3033. https://doi.org/10.1002/ajmg.a.32559 CrossRefPubMedPubMedCentralGoogle Scholar
- McCarty CA, Garber A, Reeser JC, Fost NC, Personalized Medicine Research Project Community Advisory G, Ethics, Security Advisory B (2011) Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank. Am J Med Genet A 155A:737–741. https://doi.org/10.1002/ajmg.a.33896 CrossRefPubMedPubMedCentralGoogle Scholar
- Minkler M, Wallerstein N (2003) Community-based participatory research for health. Wiley, San FranciscoGoogle Scholar
- National Human Genome Research Institute (2016) The genotype-tissue expression project (GTEx). https://www.genome.gov/27543767/. Accessed 27 Nov 2017
- National Institute of Health (2015) The precision medicine initiate cohort program—building a research foundation for 21st century medicine. http://acd.od.nih.gov/reports/PMI_WG_report_2015-09-17-Final.pdf. Accessed 27 Nov 2017
- National Institutes of Health (2018) About the All of Us research program. https://allofus.nih.gov/about/about-all-us-research-program. Accessed 17 Sept 2018
- Newkirk II VR (2016) A generation of bad blood: new research suggests a strong link between the public revelation of the Tuskegee study and poor health outcomes for black men. The Atlantic. http://www.theatlantic.com/politics/archive/2016/06/tuskegee-study-medical-distrust-research/487439/. Accessed 27 Nov 2017
- Oh SS, Galanter J, Thakur N, Pino-Yanes M, Barcelo NE, White MJ, de Bruin DM, Greenblatt RM, Bibbins-Domingo K, Wu AH, Borrell LN, Gunter C, Powe NR, Burchard EG (2015) Diversity in clinical and biomedical research: a promise yet to be fulfilled. PLoS Med 12:e1001918. https://doi.org/10.1371/journal.pmed.1001918 CrossRefPubMedPubMedCentralGoogle Scholar
- Rodriguez EM, Saad-Harfouche FG, Miller A, Mahoney MC, Ambrosone CB, Morrison CD, Underwood WR, Erwin DO (2016) Engaging diverse populations in biospecimen donation: results from the Hoy y Manana study. J Community Genet 7:271–277. https://doi.org/10.1007/s12687-016-0275-3 CrossRefPubMedPubMedCentralGoogle Scholar
- Saad-Harfouche FG, Jandorf L, Gage E, Thelemaque LD, Colon J, Castillo AG, Trevino M, Erwin DO (2011) Esperanza y Vida: training lay health advisors and cancer survivors to promote breast and cervical cancer screening in Latinas. J Community Health 36:219–227. https://doi.org/10.1007/s10900-010-9300-3 CrossRefPubMedGoogle Scholar
- Shaibi G, Singh D, De Filippis E, Hernandez V, Rosenfeld B, Otu E, Montes de Oca G, Levey S, Radecki Breitkopf C, Sharp R, Olson J, Cerhan J, Thibodeau S, Winkler E, Mandarino L (2016) The Sangre Por Salud Biobank: facilitating genetic research in an underrepresented Latino community. Public Health Genomics 19:229–238. https://doi.org/10.1159/000447347 CrossRefPubMedPubMedCentralGoogle Scholar
- Siminoff LA, Wilson-Genderson M, Mosavel M, Barker L, Trgina J, Traino HM (2017) Confidentiality in biobanking research: a comparison of donor and nondonor families’ understanding of risks. Genet Test Mol Biomarkers 21:171–177. https://doi.org/10.1089/gtmb.2016.0407 CrossRefPubMedPubMedCentralGoogle Scholar
- Siminoff LA, Wilson-Genderson M, Mosavel M, Barker L, Trgina J, Traino HM, Nathan HM, Hasz RD,Walters G (2018) Impact of cognitive load on family decision maker recall and understanding of genotype-tissue expression project (GTEx) donation requests. J Clin Ethics 29:20–30Google Scholar
- Smith S (2013) Henrietta Lacks’ family finally gets say in genetic destiny. Can we control our own? CNN. http://www.cnn.com/2013/08/07/health/henrietta-lacks-genetic-destiny/. Accessed 12 Aug 2016
- Streicher SA, Sanderson SC, Jabs EW, Diefenbach M, Smirnoff M, Peter I, Horowitz CR, Brenner B, Richardson LD (2011) Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J Community Genet 2:153–163. https://doi.org/10.1007/s12687-011-0052-2 CrossRefPubMedPubMedCentralGoogle Scholar
- United States Department of Health and Human Service Office of Minority Health (2016) Cancer and Hispanic Americans. http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlID=61. Accessed 27 Nov 2017
- United States Department of Health and Human Services Office of Minority Health (2016) Diabetes and Hispanic Americans. http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlID=63. Accessed 27 Nov 2017
- Yarborough M, Edwards K, Espinoza P, Geller G, Sarwal A, Sharp R, Spicer P (2013) Relationships hold the key to trustworthy and productive translational science: recommendations for expanding community engagement in biomedical research. Clin Transl Sci 6:310–313. https://doi.org/10.1111/cts.12022 CrossRefPubMedPubMedCentralGoogle Scholar
- Zimmer C (2013) A family consents to a medical gift, 62 years later. New York Times. http://www.nytimes.com/2013/08/08/science/after-decades-of-research-henrietta-lacks-family-is-asked-for-consent.html?_r=0. Accessed 27 Nov 2017