Communication privacy management theory (CPM) argues that disclosure is the process by which we give or receive private information. Private information is what people reveal. Generally, CPM theory argues that individuals believe they own their private information and have the right to control said information. Management of private information is not necessary until others are involved. CPM does not limit an understanding of disclosure by framing it as only about the self. Instead, CPM theory points out that when management is needed, others are given co-ownership status, thereby expanding the notion of disclosing information; the theory uses the metaphor of privacy boundary to illustrate where private information is located and how the boundary expands to accommodate multiple owners of private information. Thus, individuals can disclose not only their own information but also information that belongs to others or is owned by collectives such as families. Making decisions to disclose or protect private information often creates a tension in which individuals vacillate between sharing and concealing their private information. Within the purview of health issues, these decisions have a potential to increase or decrease risk. The choice of disclosing health matters to a friend, for example, can garner social support to cope with health problems. At the same time, the individual may have concerns that his or her friend might tell someone else about the health problem, thus causing more difficulties. Understanding the tension between disclosing and protecting private health information by the owner is only one side of the coin. Because disclosure creates authorized co-owners, these co-owners (e.g., families, friends, and partners) often feel they have right to know about the owner’s health conditions. The privacy boundaries are used metaphorically to indicate where private information is located. Individuals have both personal privacy boundaries around health information that expands to include others referred to as “authorized co-owners.” Once given this status, withholding to protect some part of the private information can risk relationships and interfere with health needs. Within the scheme of health, disclosure risks and privacy predicaments are not experienced exclusively by the individual with an illness. Rather, these risks prevail for a number of individuals connected to a patient such as providers, the patient’s family, and supportive friends. Everyone involved has a dual role. For example, the clinician is both the co-owner of a patient’s private health information and holds information within his or her own privacy boundary, such as worrying whether he or she diagnosed the symptoms correctly. Thus, there are a number of circumstances that can lead to health risks where privacy management and decisions to reveal or conceal health information are concerned. CPM theory has been applied in eleven countries and in numerous contexts where privacy management occurs, such as health, families, organizations, interpersonal relationships, and social media. This theory is unique in offering a comprehensive way to understand the relationship between the notion of disclosure and that of privacy. The landscape of health-related risks where privacy management plays a significant role is both large and complex. The situations of HIV/AIDS, cancer care, and managing patient and provider disclosure of private information help to elucidate the ways decisions of privacy potentially lead to health risks.
Sandra Petronio and Maria K. Venetis
Marya Gwadz and Amanda S. Ritchie
It is well documented that African American/Black and Hispanic individuals are underrepresented in biomedical research in the United States (U.S.), and leaders in the field have called for the proportional representation of varied populations in biomedical studies as a matter of social justice, economics, and science. Yet achieving appropriate representation is particularly challenging for health conditions that are highly stigmatized such as HIV/AIDS. African American/Black, and Hispanic individuals, referred to here as “people of color,” are greatly overrepresented among the 1.2 million persons living with HIV/AIDS in the United States. Despite this, people of color are substantially underrepresented in AIDS clinical trials. AIDS clinical trials are research studies to evaluate the safety and effectiveness of promising new treatments for HIV and AIDS and for the complications of HIV/AIDS, among human volunteers. As such, AIDS clinical trials are critical to the development of new medications and treatment regimens. The underrepresentation of people of color in AIDS clinical trials has been criticized on a number of levels. Of primary concern, underrepresentation may limit the generalizability of research findings to the populations most affected by HIV/AIDS. This has led to serious concerns about the precision of estimates of clinical efficacy and adverse effects of many treatments for HIV/AIDS among these populations. The reasons for the underrepresentation of people of color are complex and multifaceted. First, people of color experience serious emotional and attitudinal barriers to AIDS clinical trials such as fear and distrust of medical research. These experiences of fear and distrust are grounded largely in the well-known history of abuse of individuals of color by medical research institutions, and are complicated by current experiences of exclusion and discrimination in health care settings and the larger society, often referred to as structural racism or structural violence. In addition, people of color experience barriers to AIDS clinical trials at the level of social networks, such as social norms that do not support engagement in medical research and preferences for alternative therapies. People of color living with HIV/AIDS experience a number of structural barriers to clinical trials, such as difficulty accessing and navigating the trials system, which is often unfamiliar and daunting. Further, most health care providers are not well positioned to help people of color overcome these serious barriers to AIDS clinical trials in the context of a short medical appointment, and therefore are less likely to refer them to trials compared to their White peers. Last, some studies suggest that the trials’ inclusion and exclusion criteria exclude a greater proportion of people of color than White participants. Social/behavioral interventions that directly address the historical and contextual factors underlying the underrepresentation of people of color in AIDS clinical trials, build motivation and capability to access trials, and offer repeated access to screening for trials, hold promise for eliminating this racial/ethnic disparity. Further, modifications to study inclusion criteria will be needed to increase the proportion of people of color who enroll in AIDS clinical trials.