The rapid growth of information technology has generated public concern about privacy of personal information. In the health industry, rising concerns about the use and exchange of personal health information has led to the passage of the Health Insurance Portability and Accountability Act, aimed at setting guidelines for handling of health data. These guidelines are based on foundations in law and ethics that have roots in long-standing Euro-American philosophical traditions addressing individual rights and privacy. Unfortunately, these same bioethical concepts may be inconsistent with the views of some traditional cultural groups, presenting difficulties in both clinical and research situations. For instance, in traditional Navajo views the routine process of informed consent followed in both clinical and research settings can be seen as contributing to adverse outcomes. Because of the potential that evolving privacy regulations can have for substantial, unintended, adverse consequences in some cultural groups, it is important to gain a better understanding of cultural variations in views about privacy and confidentiality. To address this gap in understanding, we propose a study to explore the impacts of ethnicity and rurality on patient/consumer perspectives about health data privacy and confidentiality. A qualitative study, based on focus groups conducted among representative segments of Hispanic/Latino and Native American communities, will be conducted. A total of 18 focus groups will be conducted among Navajo, Pueblo, native Hispanic/Latino and immigrant Hispanic/Latino persons. Focus group members will be consumers of local health services. A team of experienced qualitative researchers will collect the data and analyze the findings. The result will be a report that will guide policy makers, providers of clinical services, and future researchers as well as others with need to use health data originating in similar, multi-cultural communities.
| Williams, Robert L; Willging, Cathleen E; Quintero, Gilbert et al. (2010) Ethics of health research in communities: perspectives from the southwestern United States. Ann Fam Med 8:433-9 |
