Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks

References

• Ashley, E. A. (2015). The precision medicine initiative: A new national effort. JAMA, 313, 2119–2120. doi:10.1001/jama.2015.3595
   PubMed Web of Science ®Google Scholar
• Bottrell, M. M., Alpert, H., Fischback, R. L., & Emanuel, L. L. (2000). Hospital informed consent for procedure forms: Facilitating quality patient-physician interactions. Archives of Surgery, 135, 26–33.
   PubMed Web of Science ®Google Scholar
• Boulware, L. E., Cooper, L. A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2016). Race and trust in the health care system. Public Health Reports., 118, 358–365. doi:10.1016/S0033-3549(04)50262-5
   Google Scholar
• Brann, M. (2006). The influence of illness factors on physicians’ likelihood of disclosing confidential health information to relatives of patients. Communication Studies, 57, 259–276. doi:10.1080/10510970600666933
   Google Scholar
• Brown, K. M., Drake, B. F., Gehlert, S., Wolf, L. E., DuBois, J., Seo, J., … Kaphingst, K. A. (2016). Differences in preferences for models of consent for biobanks between Black and White women. Journal of Community Genetics, 7, 41–49. doi:10.1007/s12687-015-0248-y
   PubMed Web of Science ®Google Scholar
• 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. Genetics in Medicine, 12, 116–121. doi:10.1097/GIM.0b013e3181cd6689
   PubMed Web of Science ®Google Scholar
• Campbell-Salome, G. (2018). “Yes they have the right to know, but … ”: Young adult women managing private health information as dependents. Health Communication, 1–11. doi:10.1080/10410236.2018.1452092
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention (2012). Behavioral risk factor surveillance system: 2012 survey documentation. Retrieved from http://www.cdc.gov/brfss/annual_data/annual_2012.html
   Google Scholar
• Collins, F. S., & Varmus, H. (2015). A new initiative on precision medicine. The New England Journal of Medicine, 372, 793–795. doi:10.1056/NEJMp1500523
   PubMed Web of Science ®Google Scholar
• Corbie-Smith, G., Thomas, S. B., & George, D. M. M. S. (2002). Distrust, race, and research. Archives of Internal Medicine, 162, 2458–2463.
   PubMed Web of Science ®Google Scholar
• DeAngelis, C. D. (2000). Conflict of interest and the public trust. JAMA, 284, 2237–2238.
   PubMed Web of Science ®Google Scholar
• Drake, B. F., Brown, K., McGowan, L. D. A., Haslag-Minoff, J., & Kaphingst, K. (2016b). Secondary consent to biospecimen use in a prostate cancer biorepository. BMC Research Notes, 9, 346. doi:10.1186/s13104-016-2159-3
   PubMedGoogle Scholar
• Drake, B. F., Brown, K. M., Gehlert, S., Wolf, L. E., Seo, J., Perkins, H., … Kaphingst, K. A. (2016a). Development of plain language supplemental materials for the Biobank informed consent process. Journal of Cancer Education, 32, 836–844. doi:10.1007/s13187-016-1029-y
   Web of Science ®Google Scholar
• Dulbecco, R. (1986). A turning point in cancer research: Sequencing the human genome. Science, 231, 1055–1057.
   PubMed Web of Science ®Google Scholar
• George, S., Duran, N., & Norris, K. (2014). A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health, 104, e16–e31. doi:10.2105/AJPH.2013.301706
   PubMed Web of Science ®Google Scholar
• Hall, M. A., Camacho, F., Lawlor, J. S., DePuy, V., Sugarman, J., & Weinfurt, K. (2006). Measuring trust in medical researchers. Medical Care, 44, 1048–1053. doi:10.1097/01.mlr.0000228023.37087.cb
   PubMed Web of Science ®Google Scholar
• Hall, M. A., Dugan, E., Zheng, B., & Mishra, A. K. (2001). Trust in physicians and medical institutions: What is it, can it be measured, and does it matter? The Milbank Quarterly, 79, 613–639.
   PubMed Web of Science ®Google Scholar
• Hansson, M. G. (2009). Ethics and biobanks. British Journal of Cancer, 100, 8–12. doi:10.1038/sj.bjc.6604795
   PubMed Web of Science ®Google Scholar
• Hayes, A. F., & Matthes, J. (2009). Computational procedures for probing interactions in OLS and logistic regression: SPSS and SAS implementations. Behavior Research Methods, 41, 924–936. doi:10.3758/BRM.41.3.924
   PubMed Web of Science ®Google Scholar
• Henderson, G., Garrett, J., Bussey-Jones, J., Moloney, M. E., Blumenthal, C., & Corbie-Smith, G. (2008). Great expectations: Views of genetic research participants regarding current and future genetic studies. Genetics in Medicine, 10, 193–200. doi:10.1097/GIM.0b013e318164e4f5
   PubMed Web of Science ®Google Scholar
• Hughes, T. B., Varma, V. R., Pettigrew, C., & Albert, M. S. (2017). African Americans and clinical research: Evidence concerning barriers and facilitators to participation and recruitment recommendations. The Gerontologist, 57, 348–358. doi:10.1093/geront/gnv118
   PubMed Web of Science ®Google Scholar
• Javitt, G. (2010). Why not take all of me? Reflections on ‘The immortal life of Henrietta Lacks’ and the status of participants in research using human specimens. Minnesota Journal of Law, Science & Technology, 11, 713–755.
   Google Scholar
• Kagarise, M. J., & Sheldon, G. F. (2000). Translational ethics. Archives of Surgery, 135, 39–45.
   PubMedGoogle Scholar
• Kaufman, D., Murphy, J., Scott, J., & Hudson, K. (2008). Subjects matter: A survey of public opinions about a large genetic cohort study. Genetics in Medicine, 10, 831–839. doi:10.1097/GIM.0b013e31818bb3ab
   PubMed Web of Science ®Google Scholar
• Kerasidou, A. (2017). Trust me, I’m a researcher!: The role of trust in biomedical research. Medicine, Health Care and Philosophy, 20, 43–50. doi:10.1007/s11019-016-9721-6
   PubMed Web of Science ®Google Scholar
• Koenig, H. G., Boulware, L . E., Cooper, L . A., Ratner, L. E., LaVeist, T. A., & Powe, N. R. (2003). Race and trust in the health care system. Public Health Reports, 118, 358–365.
   PubMed Web of Science ®Google Scholar
• LaVeist, T. A., Nickerson, K. J., & Bowie, J. V. (2000). Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Medical Care Research and Review, 57, 146–161. doi:10.1177/1077558700057001S07
   PubMed Web of Science ®Google Scholar
• Lee, C. I., Bassett, L. W., Leng, M., Maliski, S. L., Pezeshki, B. B., Wells, C. J., … Naeim, A. (2012). Patients’ willingness to participate in a breast cancer biobank at screening mammogram. Breast Cancer Research and Treatment, 136, 899–906. doi:10.1007/s10549-012-2324-x
   PubMed Web of Science ®Google Scholar
• Lemke, A. A., Wolf, W. A., Hebert-Beirne, J., & Smith, M. E. (2010). Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics, 13, 368–377. doi:10.1159/000276767
   PubMed Web of Science ®Google Scholar
• Luebbert, R., & Perez, A. (2015). Barriers to clinical research participation among African Americans. Journal of Transcultural Nursing, 27, 456–463. doi:10.1177/1043659615575578
   PubMed Web of Science ®Google Scholar
• Manolio, T. A., Chisholm, R. L., Ozenberger, B., Roden, D. M., Williams, M. S., Wilson, R., … Frazer, K. A. (2013). Implementing genomic medicine in the clinic: The future is here. Genetics in Medicine, 15, 258–267. doi:10.1038/gim.2012.157
   PubMed Web of Science ®Google Scholar
• McGuire, A. L., Hamilton, J. A., Lunstroth, R., McCullough, L. B., & Goldman, A. (2008). DNA data sharing: Research participants’ perspectives. Genetics in Medicine, 10, 46–53. doi:10.1097/GIM.0b013e31815f1e00
   PubMed Web of Science ®Google Scholar
• Mello, M. M., & Wolf, L. E. (2010). The Havasupai Indian tribe case – Lessons for research involving stored biologic samples. The New England Journal of Medicine, 363, 204–207. doi:10.1056/NEJMp1005203
   PubMed Web of Science ®Google Scholar
• Mouton, C. P., Harris, S., Rovi, S., Solorzano, P., & Johnson, M. S. (1997). Barriers to black women’s participation in cancer clinical trials. Journal of the National Medical Association, 89, 721–727.
   PubMed Web of Science ®Google Scholar
• National Cancer Institute (2016). NCI dictionary of cancer terms. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/genomics
   Google Scholar
• National Institute of Health (2018). All of Us research program: Core Protocol vol 1.7 Retrieved from https://allofus.nih.gov/sites/default/files/aou_core_protocol_v1.7_mar_2018.pdf
   Google Scholar
• National Research Council. (2011). Toward precision medicine: Building a knowledge network for biomedical research and a new taxonomy of disease. Washington, DC: National Academies Press.
   Google Scholar
• Nicol, D., Critchley, C., McWhirter, R., & Whitton, T. (2016). Understanding public reactions to commercialization of biobanks and use of biobank resources. Social Science & Medicine, 162, 79–87. doi:10.1016/j.socscimed.2016.06.028
   PubMed Web of Science ®Google Scholar
• O’Doherty, K. C., & Hawkins, A. (2010). Structuring public engagement for effective input in policy development on human tissue biobanking. Public Health Genomics, 13, 197–206. doi:10.1159/000279621
   PubMed Web of Science ®Google Scholar
• Olufowote, J. O. (2011). A dialectical perspective on informed consent to treatment: An examination of radiologists’ dilemmas and negotiations. Qualitative Health Research, 21, 839–852. doi:10.1177/1049732311402097
   PubMed Web of Science ®Google Scholar
• Pentz, R. D., Billot, L., & Wendler, D. (2006). Research on stored biological samples: Views of African American and White American cancer patients. American Journal of Medical Genetics Part A, 140, 733–739. doi:10.1002/ajmg.a.31154
   PubMedGoogle Scholar
• Petronio, S. (2002). Boundaries of privacy: Dialectics of disclosure. Albany: State University of New York Press.
   Google Scholar
• Petronio, S., & Durham, W. T. (2015). Communication privacy management theory: Significance for interpersonal communication. In D. O. Braithwaite & P. Schrodt (Eds.), Engaging theories in interpersonal communication: Multiple perspectives (pp. 335–347). California, US: Sage Publications.
   Google Scholar
• Petronio, S., DiCorcia, M. J., & Duggan, A. (2012). Navigating ethics of physician-patient confidentiality: A communication privacy management analysis. The Permanente Journal, 16, 41–45.
   PubMedGoogle Scholar
• Petronio, S., & Sargent, J. (2011). Disclosure predicaments arising during the course of patient care: Nurses’ privacy management. Health Communication, 26, 255–266. doi:10.1080/10410236.2010.549812
   PubMed Web of Science ®Google Scholar
• Platt, J., Bollinger, J., Dvoskin, R., Kardia, S. L., & Kaufman, D. (2013). Public preferences regarding informed consent models for participation in population-based genomic research. Genetics in Medicine, 16, 11–18. doi:10.1038/gim.2013.59
   PubMed Web of Science ®Google Scholar
• Simon, C. M., L’Heureux, J., Murray, J. C., Winokur, P., Weiner, G., Newbury, E., … Zimmerman, B. (2011). Active choice but not too active: Public perspectives on biobank consent models. Genetics in Medicine, 13, 821–831. doi:10.1097/GIM.0b013e31821d2f88
   PubMed Web of Science ®Google Scholar
• Skloot, R. (2011). The immortal life of Henrietta Lacks. New York, NY: Random House.
   Google Scholar
• Stepanikova, I., Mollborn, S., Cook, K. S., Thom, D. H., & Kramer, R. M. (2006). Patients’ race, ethnicity, language, and trust in a physician. Journal of Health and Social Behavior, 47, 390–405. doi:10.1177/002214650604700406
   PubMed Web of Science ®Google Scholar
• US Department of Health and Human Services. (2009). Code of federal regulations. Title 45. Public Welfare CFR, 46. Retrieved from http://www.hhs.gov/ohrp/policy/ohrpregulations.pdf
   Google Scholar
• Wanzer, M. B., Wojtaszczyk, A. M., Schimert, J., Missert, L., Baker, S., Baker, R., & Dunkle, B. (2010). Enhancing the “informed” in informed consent: A pilot test of a multimedia presentation. Health Communication, 25, 365–374. doi:10.1080/10410231003775198
   PubMed Web of Science ®Google Scholar