Views on Research Strategies

VIEWS ON RESEARCH STRATEGIES

Views on Research Strategies

A Call for Further Research on the Impact of State-Level Immigration Policies on Public Health Lisa J. Hardy, PhD, Christina M. Getrich, PhD, Julio C. Quezada, Amanda Guay, MPH, Raymond J. Michalowski, PhD, and Eric Henley, MD, MPH

Arizona’s Support Our Law Enforcement and Safe Neighborhoods Act, signed into law in April 2010, is already adversely affecting public health in the state. Our findings from a study on childhood obesity in Flagstaff suggest that the law changed health-seeking behaviors of residents of a predominantly Latino neighborhood by increasing fear, limiting residents’ mobility, and diminishing trust of officials. These changes could exacerbate barriers to healthy living, limit access to care, and affect the overall safety of the neighborhood. Documentation of the on-theground impact of Arizona’s law and similar state-level immigration policies is urgently needed. To inform effective policymaking, such research must be community engaged and include safety measures beyond the usual protocols. (Am J Public Health. 2012;102:1250–1254. doi:10.2105/AJPH.2011.300541)

IN APRIL 2010, ARIZONA LEGislators passed the Support Our Law Enforcement and Safe

Neighborhoods Act1 (SB 1070). SB 1070 took unprecedented steps in the enforcement of immigration law by making failure to possess immigration documents a crime and expanding police power to detain persons suspected of being in the United States illegally. In subsequent months, a federal judge placed sections of the law under temporary injunction; however, by that point, a wide range of Arizona residents had begun feeling its impact. Although the stated target of SB 1070 was undocumented immigrants, the fallout from its passage has reverberated throughout Arizona communities, affecting not only the undocumented but also families, friends, and neighbors of all immigration statuses. An assessment of the long-term impact of SB 1070 and similar state-level immigration policies on public health is urgently needed. To date, the effects of these policies have not been systematically documented. Pilot data suggest that the passage of SB 1070 resulted in immediate changes in health behavior and health care use even before enforcement began.2 Formal documentation of

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the unintended effects of laws such as Arizona’s SB 1070 should be undertaken to inform policymaking. Here we review the immigration policy context in which the Arizona law and copycat bills emerged and present data from an ethnographic case study that demonstrate the potential of such policies to adversely affect public health.

CONTEXT Immigrants overwhelmingly suffer disproportionate health consequences of racial and ethnic disparities3; stringent immigration policies and enforcement practices could exacerbate these disparities. Documentation of the local, fastmoving impact of laws such as SB 1070 is crucial for understanding public health, especially in light of the national trend toward replication, most recently in Alabama, Georgia, Indiana, South Carolina, and Utah. In the first half of 2011 alone, state legislators introduced an unprecedented 1592 bills and resolutions relating to immigrants and refugees, although most of these bills were not ultimately enacted.4 Thirty of these bills explicitly focused on immigrant

access to health care and public benefits. In the absence of federal immigration reform, which has not been effected since 1996, state legislatures and localities have become the arena for legal efforts to restrict immigration by targeting immigrants. SB 1070, although unprecedented in many respects, represents the culmination of broader trends in US immigration policy during the previous 25 years. The precedent for state-level policies targeting undocumented immigrants was set in 1994 with the passage of California’s Save Our State Initiative5 (Proposition 187), a ballot initiative designed to prohibit undocumented immigrants from accessing education, social services, and health care. Although it passed by a wide margin, a federal court later found Proposition 187 unconstitutional.6 Proposition 187 paved the way for the federal welfare reform law of 1996,7 which established restrictions on legal immigrants’ access to programs and produced a chilling effect on the ability of children who were US citizens to access programs for which they were eligible,

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because their immigrant parents’ fears prompted withdrawal from services.8 Also in 1996, the federal government passed an immigration reform law9 that strengthened the enforcement of immigration policies, accomplished by increased deportations, longer periods of immigrant detention, and the deputization of state and local law enforcement officials. The law also bolstered border enforcement by mandating the construction of border fences and increasing the size of the Border Patrol force; it signaled an intensive focus on enforcement as the cornerstone of immigration policy. Comprehensive federal immigration reform stalled throughout the first decade of the 21st century despite a plethora of bills introduced in the US House and Senate. One high-profile 2005 bill, HR 4437,10 was in many ways a predecessor for SB 1070. HR 4437 bolstered enforcement, but also added provisions for making illegal presence in the United States an aggravated felony (rather than a misdemeanor) and criminalizing aiding or assisting unauthorized immigrants. Although the bill was killed in the Senate, it became the flashpoint for a series of immigrant rights protests in spring 2006. As Congress continued in a stalemate after HR 4437, focus shifted to interior enforcement efforts, namely, workplace and home raids. During this period, immigration enforcement activities devolved from federal immigration officials to state entities and even local police officers. In addition, the Secure Communities program, which initially

started in 2008 and has expanded greatly since, promotes the sharing of local law enforcement information with federal enforcement agencies.11 Immigration raids and deportations have been shown to have negative health consequences not only on detained immigrants but also on their families, including any children who are US citizens.12 It was within this context of decreased access to health care and social services, increased enforcement, and the devolution of federal immigration power to states that SB 1070 emerged. Although heavily challenged and critiqued, SB 1070 was just the beginning of Arizona’s targeting of immigrants. In the subsequent 2011 legislative session, lawmakers explicitly sought to limit immigrants’ access to health care. This measure did not pass, but the effort portended further challenges to immigrants’ use of health care services in Arizona and throughout the country.

A CASE STUDY FROM FLAGSTAFF Hermosa Vida (A Beautiful Life), a community-engaged, mixed-method exploratory study of childhood obesity and wellness that took place in a predominantly Latino neighborhood, demonstrated the public health effects of Arizona immigration policy. Our study design incorporated semistructured qualitative interviews and focus groups, conducted by trusted community researchers, with neighborhood residents (n = 37); health care and social service providers, such

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as directors of state-level social service entities, legal professionals, and law enforcement personnel (n = 12); and community leaders, such as neighborhood association members (n = 11). Fear of immigration authorities emerged as a central concern of our participants. Although we did not design Hermosa Vida to investigate immigration policy, the passage and implementation of the law occurred during data collection. The impact of the new bill as a determinant in the health and wellbeing of community residents quickly became apparent. Interviewees reported an immediate negative effect on existing healthy lifestyle practices as community residents struggled to deal with 3 primary effects from the bill’s fallout: increased fear, restricted mobility, and decreased trust.

Fear One irony of SB 1070 was that its effect in the neighborhood was to increase the overall level of fear instead of making residents feel safer. SB 1070 created a generalized climate of fear in the neighborhood: fear of being deported; of children being separated from parents; of losing homes or jobs; and of suffering financial hardship and other consequences, including police harassment. During an interview in June of 2010, one mother’s words highlighted the poignancy of these fears: If they separate the families, where do the kids go? If they take me and the kids stay with social services, then they give those kids to adoption and that’s not right. So I think they have to start from scratch all over to make sure to secure the families and to make

sure that it’s OK and they’re not going to have any problems.

Residents also reflected on how SB 1070---related fear was negatively affecting their health, in a repeat of the aftermath of Proposition 187 in the 1990s.13 When asked where her neighbors shopped for healthy food, a 65-yearold woman who had lived in the neighborhood for more than 40 years answered, “No one wants to go far anymore. They are afraid. They go to the nearest place to get whatever they can find to eat.” In a neighborhood with no major grocery store and several fast food and gas station markets, fear of travel in public could severely skew food purchasing and consumption behaviors. This woman’s comments demonstrated the impact of the law on community members who had already reported challenges in accessing healthy food. Residents also reported reluctance to allow their children to engage in physical exercise outside the home. Lack of access to healthy food and limited opportunity to exercise are barriers to healthy living.

Mobility Beyond its effect on specific illnesses, SB 1070 affected people’s mobility within the neighborhood in the wake of public raids that resulted in arrests and deportations. Increased policing of public space decreases people’s comfort levels in public and limited their mobility in general.14 These enforcement activities affected legal immigrants and citizens as well, because SB 1070 includes punitive measures for

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people who associate—even unknowingly—with undocumented people. Broad application of enforcement practices has been shown to negatively affect health care seeking behaviors and access to health care in US---Mexico border communities15 and throughout the United States.16 Residents of our study neighborhood reported major shifts in their ability to move about the neighborhood safely, which in turn affected their access to health care. Several providers described a drop in health maintenance, such as regular doctor visits, diabetes education, vaccines, prenatal care, HIV education, and procurement of medications, as the result of SB 1070. Policymakers and health care and service providers suggested that drops in use of public services might be attributable to the outflux of Latino residents after the passage of SB 1070. However, stakeholders also communicated frustrations with the dearth of available statistics on these trends, making it difficult to assess the source of the drop in service use. Nonetheless, they noted dramatic changes in clinic intake and service use, suggesting rapid behavioral change among those who remained. (We did not include detailed information about our primary care and social service provider participants in our data. In the highly politicized climate in the state of Arizona, many feared losing their jobs if they reported or took action on anything related to immigration policy.) One employee of the county public health services district described these changes in an e-mail message:

There has been a definite change in the daily lives of the families I work with, [as] families limit going out, driving too far from their home, even if it’s just to the other side of town. Families will not attend events around town because they are afraid. I guess their biggest fear for families is to ultimately get deported and be separated from their families so they will do anything to prevent that from happening. I really feel that this ongoing fear has brought some health issues in some of the families I visit, such as high blood sugar, high blood pressure, [and] high anxiety.

Fear of immigration officials and deportation exacerbated people’s existing medical conditions (which they were less likely to receive care for in the changed climate) while creating new ones, such as stress or emotional distress,17 which also need to be systematically documented and addressed.

Trust Beyond the adverse impact on individuals’ health and on health care use, SB 1070 adversely affected the overall health of the study community. Despite its rhetoric of support for law enforcement, SB 1070 caused rifts among law enforcement officials and between them and the local residents they were charged with protecting. Statewide, disagreement among law enforcement pitted, for example, a union for Phoenix Police Department officers who supported the bill against a statewide association of police chiefs who opposed it.18 In addition, enforcement practices contributed to a broader distrust of any kind of officials, including local law enforcement.19 Our interview data and subsequent research showed that

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police relied primarily on citizen reporting in Flagstaff, which was greatly diminished after passage of SB 1070. One officer stated that he would uphold SB 1070 as his responsibility to the law, but that he also observed a difference in the way people interacted with him on the street. He added, Often it comes down to this . . . if it bothers someone they need to call, and one of our biggest issues in [the neighborhood] is making sure people feel safe enough to call. Senate Bill 1070, that’s not helping that. I mean let’s face it, a mom that’s undocumented and living at home with 2 kids sees something out her front window: is she gonna call us? . . . If that crime’s not reported we don’t know that we have a problem. . . . We talk about this all the time.

Legal professionals we interviewed also anticipated a drop in the propensity of residents to report domestic violence or apply for U visas, which provide temporary legal status to victims of violence under the Victims of Trafficking and Violence Protection Act of 200020 (HR 3244). SB 1070, then, likely inadvertently affected rates of substance abuse and domestic violence in the neighborhood.

DISCUSSION Findings from the Hermosa Vida project point to the need for more expansive documentation and analyses of the impacts of immigration policies to assess their potential threats to public health and examine how they exacerbate health inequalities, with the ultimate goal of promoting health equity. Our case study demonstrated the immediate and marked effects of SB 1070 on an Arizona

community. As we continue to document the medium- and longer-term health impacts of SB 1070, service providers and health officials statewide continue to report concerns about a dropoff in the use of services by the public and about their presumed role in the enforcement of the law. Directors of social service programs have sought legal advice on reporting requirements; however, as one official pointed out, if the lawyers cannot even agree about how to proceed, it remains unclear how clients are to access and providers are to dispense health care. Research that investigates the decisions people make in their everyday lives to shop for healthy food, walk through public places, talk with police officers, and engage in healthy activities while living in a climate of fear cannot be undertaken without serious consideration of the safety of research participants. Such research requires coalitions or partnerships with individuals and entities deeply embedded in communities that enjoy long histories of trust. In the case of Hermosa Vida, involvement of local researchers provided critical insights into the lives of people living in a community fraught with fear during a time of major upheaval. SB 1070 and similar laws introduce additional challenges to researchers in their efforts to document health trends. High levels of fear in a community pose a particular challenge to public health researchers; to overcome it their research should incorporate trusted insiders through participatory approaches such as community-based participatory



research21 and rapid assessment, response, and evaluation,22 which we used in our case study. Research designs focusing on immigration also require additional safeguards beyond the usual human participants’ protection, such as obtaining a National Institutes of Health Certificate of Confidentiality that would protect data from subpoena, ensuring the safety and confidentiality of participants irrespective of their immigration status.23 These safeguards will be essential for community members and service providers, who also report fear of job loss and other repercussions of documenting these trends, which stem from a highly politicized immigration policy. The social and legal risks that participants might face as a result of participation must not be underestimated. Finally, research on public health and policy must be rapid to capture immediate changes in behavior that result from immigration laws. This systematic documentation will serve as a baseline for future assessments of change over time and inform a heated state and national debate on immigrants, health, and human rights. j

ordered at http://www.ajph.org by clicking the “Reprints” link. This article was accepted October 17, 2011.

2. LJ Hardy and K Bohan, A Beautiful Life—Hermosa Vida—Nizhóní Liná: Community-Engaged Assessment and Strategy Report, 2nd ed. (Flagstaff, AZ: North Country HealthCare, 2012).

Contributors

3. Brian D. Smedley, Adrienne Y. Stith and Alan R. Nelson, eds., Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (Washington, DC: National Academies Press, 2003); Heide Castañeda, “Immigration and Health: Conceptual, Methodological, and Theoretical Propositions for Applied Anthropology,” NAPA Bulletin 34, no. 1 (2010): 6---27; Andrew M. Ryan, Gilbert C. Gee and David F. Laflamme, “The Association Between Self-Reported Discrimination, Physical Health and Blood Pressure: Findings From African Americans, Black Immigrants, and Latino Immigrants in New Hampshire,” Journal of Health Care for the Poor and Underserved 17, no. 2, suppl (2006): 116--132; Andrea J. Romero, Daniel Martinez and Scott C. Carvajal, “Bicultural Stress and Adolescent Risk Behaviors in a Community Sample of Latinos and Non-Latino European Americans,” Ethnicity and Health 12, no. 5 (2007): 443---463.

L. J. Hardy designed and supervised the study, originated the article, and led the writing. C. M. Getrich co-led the writing and contributed expertise in immigration policy. J. C. Quezada was an ethnographer on the study and contributed substantially to analysis of data, contributed to writing, and proofread the final version. A. Guay served as grant director and contributed to writing of the article. R. J. Michalowski contributed to discussion of topics and a related grant proposal and read the final version. E. Henley contributed to organization and conceptualization of article and proofread the final version.

Acknowledgments This research was supported by the Kresge Foundation. We thank Robert T. Trotter II, Phyllis Meadows, and our multidisciplinary steering committee for their contributions to the design, analysis, and articulation of this research. Our research would not have been possible without the collaboration of Coral Evans and Irene Montaño, the insights of community researchers, and the participation of all of the people who gave their time and insight to this project. We are also grateful to our anonymous reviewers. Note. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Kresge Foundation.

Human Participation Protection The study protocol was approved by Northern Arizona University’s institutional review board.

About the Authors Lisa J. Hardy and Raymond J. Michalowski are with Northern Arizona University, Flagstaff. Christina M. Getrich is with the University of New Mexico, Albuquerque. Julio C. Quezada, Amanda Guay, and Eric Henley are with North Country HealthCare, Flagstaff, AZ. Correspondence should be sent to L. J. Hardy, PhD, Research Assistant Professor, Dept of Anthropology, Fellow, Interdisciplinary Health Policy Institute, Northern Arizona University, PO Box 15200, Flagstaff, AZ 86011 (e-mail: Lisa.Hardy@nau.edu). Reprints can be

End Notes 1. S. B. 1070, 49th Leg., 2d Reg. Sess. (Ariz. 2010). Because it was an omnibus bill, the multiple provisions of SB 1070 are dispersed through many locations in the Arizona Revised Statutes (ARS). For details see Andy Silverman, “Support Our Law Enforcement and Safe Neighbors Act SB 1070: An Overview (as amended by HB 2162),” http://www.law.arizona.edu/Library/ Research/guides/SB1070overview.pdf (accessed April 17, 2012).

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4. National Council of State Legislatures, “State Laws Related to Immigration and Immigrants,” http://www.ncsl.org/default. aspx?tabid=19897 (accessed June 7, 2011). 5. Proposition 187 (CA Leg. 1994). Cal. Educ. Code §48215, Cal. Health and Safety Code § 103(a). 6. “California: Proposition 187 Unconstitutional,” Migration News 4 (1997), http://migration.ucdavis.edu/mn/ comments.php?id=1391_0_2_0 (accessed April 12, 2012). 7. The Personal Responsibility and Work Opportunity Reconciliation Act of 1996, Pub. L. No. 104-- 193, 110 Stat. 2105, 104th Congress, August 22, 1996, http://www.fns. usda.gov/snap/rules/legislation/pdfs/ pl_104-193.pdf (accessed April 17, 2012). 8. Jacqueline Hagan, Nestor Rodriguez, Randy Capps and Nika Kabiri. “The Effects of Recent Welfare and Immigration Reforms on Immigrants’ Access to Health Care,” The International Migration Review 37, no. 2 (2003): 444---463. 9. The Illegal Immigration Reform and Immigrant Responsibility Act of 1996, Division C of Pub. L. No. 104-208, 110 Stat. 3009---546, 104th Congress; September 30, 1996. 10. Border Protection, Antiterrorism, and Illegal Immigration Control Act of 2005. H.R. 4437, 109th Congress, December 6, 2005, http://www.gpo.gov/fdsys/pkg/

BILLS-109hr4437rfs/pdf/BILLS109hr4437rfs.pdf (accessed April 17, 2012). 11. Mathew Coleman, “Immigration Geopolitics Beyond the Mexico-- US Border,” Antipode 39, no. 1 (2007): 54-- 76; Jonathan X. Inda, Targeting Immigrants: Government, Technology, and Ethics (Malden, MA: Blackwell, 2006); US Immigration and Customs Enforcement, “Secure Communities,” (Washington, DC: US Immigration and Customs Enforcement, 2011), http://www. ice.gov/secure_communities (accessed May 3, 2012). 12. Randolph Capps, Rosa M. Castañeda, Ajay Chaudry, and Robert Santos, Paying the Price: The Impact of Immigration Raids on America’s Children, http://www.urban. org/UploadedPDF/411566_immigration_ raids.pdf (acessed November 18, 2007); Ajay Chaudry, Randolph Capps, Juan Pedroza, Rosa M. Castañeda, Robert Santos and Molly M. Scott, Facing Our Future: Children in the Aftermath of Immigration Enforcement, http://www.urban.org/UploadedPDF/ 412020_FacingOurFuture_final.pdf (accessed June 16, 2010); Luis H. Zayas, “Protecting Citizen-Children Safeguards Our Common Future,” Journal of Health Care for the Poor and Underserved 21, no. 3 (2010): 809---814. 13. Steven Asch, Barbara Leake, and Lillian Gelberg, “Does fear of immigration authorities deter tuberculosis patients from seeking care?” The Western Journal of Medicine 161, no. 4 (1994): 373---376; Marc L. Berk and Claudia L. Schur, The Effect of Fear on Access to Care Among Undocumented Latino Immigrants. Journal of Immigrant Health 3, no. 3 (2001): 151---156; Joshua J. Fenton, Ralph Catalano, and William A. Hargreaves, “Effect of Proposition 187 on Mental Health Service Use in California: A Case Study,” Health Affairs (Project Hope) 15, no. 1 (1996): 182---190. 14. Nicholas De Genova, Working the Boundaries: Race, Space, and “Illegality” in Mexican Chicago (Durham, NC: Duke University Press, 2005); Mary Romero, “Racial Profiling and Immigration Law Enforcement: Rounding Up of the Usual Suspects in the Latino Community,” La Critica Sociologica 32, no. 2---3 (2006): 447---473. 15. Guillermina G. Núñez and Josiah M. Heyman, “Entrapment Processes and Immigrant Communities in a Time of Heightened Border Vigilance,” Human Organization 66, no. 4 (2007): 354---365; Josiah M. Heyman, Guillermina G. Núñez, and Victor Talavera, “Healthcare Access and Barriers for Unauthorized Immigrants in El Paso County, Texas,” Family

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and Community Health 32, no. 1 (2009): 4---21. 16. Karen Hacker, et al., “The Impact of Immigration and Customs Enforcement on Immigrant Health: Perceptions of Immigrants in Everett, Massachusetts, USA,” Social Science & Medicine 73, no. 4 (2011): 586---594. 17. Patricia A. Cavazos-Rehg, Luis H. Zayas, and Edward L. Spitznagel, “Legal Status, Emotional Well-Being, and Subjective Health Status of Latino Immigrants,” Journal of the National Medical Association 99, no. 10 (2007): 1126---1131.

18. KPHO-TV, “Ariz. Lawmakers Pass Controversial Illegal Immigration Bill,” April 16, 2010, http://www.kpho.com/ politics/23179490/detail.html (accessed February 2, 2011). 19. Hacker, Social Science & Medicine 73: 586---594. 20. H.R. 3244 Victims of Trafficking and Violence Protection Act of 2000_114 Stat. 1464 Public Law 106---386—OCT. 28, 2000, http://www.govtrack.us/congress/ bills/106/hr3244 (accessed April 17, 2012). 21. Meredith Minkler and Nina Wallerstein, eds., Community Based

Participatory Research for Health (San Francisco, CA: Jossey-Bass, 2003); Nina B. Wallerstein and Bonnie Duran, “Using Community-Based Participatory Research to Address Health Disparities,” Health Promotion Practice 7, no. 3 (2006): 312---323. 22. Robert T. Trotter II, Richard H. Needle, Eric Goosby, Christopher Bates, and Merrill Singer, “A Methodological Model for Rapid Assessment, Response, and Evaluation: The RARE Program in Public Health,” Field Methods 13, no. 2 (2001): 317---159; Robert T. Trotter II and Richard H. Needle, RARE Community

Guide (Washington, DC: Office of Public Health and Science, Office of HIV/AIDS Policy, 2000). 23. Maria K.E. Lahman, Bernadette M. Mendoza, Katrina L. Rodriguez, and Jana L. Schwartz, “Undocumented Research Participants: Ethics and Protection in a Time of Fear,” Hispanic Journal of Behavioral Sciences 33, no. 3 (2011): 304---322; Lizette Ojeda, Lisa Y. Flores, Rocio R. Meza, and Alejandro Morales, “Culturally Competent Qualitative Research With Latino Immigrants,” Hispanic Journal of Behavioral Sciences 33, no. 2 (2011): 184---203.

Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations Peter Davidson, PhD, and Kimberly Page, PhD, MPH

We examined the historical and regulatory framework of research with human participants in the United States, and described some possible unintended consequences of this framework in the context of paying young injection drug users for their time participating in behavioral and medical research. We drew upon our own experiences while conducting a long-running epidemiological study of hepatitis C virus infection. We found that existing ethical and regulatory framings of research participation may lead to injustices from the perspectives of research participants. We propose considering research participation as a specialized form of work and the use of community advisory boards to facilitate discussion about appropriate compensation for research participation

among economically marginalized populations. (Am J Public Health. 2012;102:1254– 1259. doi:10.2105/AJPH.2011. 300418)

AS RESEARCHERS, OUR CONstructions of what is and what is not “ethical research” have been heavily informed by our knowledge of the terrible ethical failures of members of our tribe within the past 70 years—the willing participation of some scientists in human experimentation on the victims of the Holocaust, the Tuskegee experiment, Willowbrook, the Milgram experiments, and numerous other large and small abuses of human beings. Responses to these horrors, such as the Nuremberg Code, the Declaration of Helsinki, the Belmont Report, and their derivative processes, protocols, and laws have all sought to describe and codify what comprises ethical

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research, and in doing so prevent future abuses. In the United States, the most important of these has been the 1979 Belmont Report, a product of the then---US Department of Health, Education, and Welfare. The Belmont Report enshrines 3 principles for research: respect for persons (protecting the autonomy of all people and treating them with courtesy and respect and allowing for informed consent), beneficence (maximizing benefits for the research project while minimizing risks to the research participants), and justice (ensuring reasonable, nonexploitative, and well-considered procedures are administered fairly).1 The policy approach described in the Belmont Report is largely implemented in US law through Title 45 (Public Welfare), Part 46 (Protection of Human Subjects) of the US Code of Federal Regulations (hereafter 45

CFR 46), which provides minimum standards required for federally funded research involving human participants. Taken as a whole, 45 CFR 46 and the history behind it create what the sociologist Erving Goffman referred to as a “frame,” a way of ordering and making sense of a situation that has consequences for how we understand subsequent events.2 A simple example of how framing can have a significant impact on the way an individual understands an event can be seen in a common medical procedure such as a testicular or cervical examination: a relative stranger asks the individual to disrobe, then views and even handles the individual’s genitals. Under almost any other circumstance, this would be experienced as a violating and even traumatic event because the individual would understand the process as
