The President’s Cancer Panel Assesses Unequal Cancer Burden on Diverse U.S. Ethnic Groups

Terri Hansen
11/12/12

Racial and ethnic minority groups represented roughly one-third of the U.S. population in 2008 but are projected to become the collective majority before the middle of the century. But the current understanding of cancer risk, progression and outcomes is based largely on studies of non-Hispanic white populations and are often not appropriate for individuals of non-European descent says the President’s Cancer Panel (PCP) report, America's Demographic and Cultural Transformation: Implications for Cancer, released in 2011.

Therefore, the current understanding of risk factors, screening guidelines and treatment may not be appropriate for individuals of non-European descent. The PCP report identifies an urgent need to expand research and improve understanding of the factors that influence cancer risk and outcomes among diverse populations. The PCP calls for higher standards of cultural competence among health care professionals to better address cultural and language barriers that can negatively affect the quality of patient care. Cancer incidence among minority populations will nearly double between 2010 and 2030 while increasing 31 percent among the non-Hispanic white population. Minority and other underserved populations who are disproportionately affected by certain cancers are often diagnosed at later stages of disease, and frequently have lower rates of survival once diagnosed. The PCP convened four meetings between 2009 and 2010 to assess the factors contributing to the unequal cancer burden shouldered by diverse U.S. groups. They heard testimony from experts from the academic, government, and cancer advocacy communities, and from the public.

Indian Country Today Media Network summarizes the PCP’s findings and conclusions, and reports recommendations the research and health care communities can take to propel the nation toward effective cancer education and treatment services that reach beyond traditional ideas of race, ethnicity, and culture. Three key factors complicate data collection concerning race and ethnicity: self-report of race and ethnicity, racial and ethnic classification by others, and lack of standardization in data collection related to race and ethnicity. Disagreement about the meaning and appropriate use of race, ethnicity, and culture in research is one of the most contentious subjects in science. Many researchers believe that focusing on socially constructed definitions of race and ethnicity may minimize attention to and evaluation of cultural, social, environmental, and economic influences on lifestyles, attitudes, and behaviors that are likely to have more direct effects on cancer and other disease outcomes. Race and ethnicity often are used as proxies for poverty, poor housing/living conditions, lower educational attainment, poor diet and obesity, low physical activity levels, high-risk behaviors like tobacco use, environmental exposures, and limited access to health care, factors that predict poorer health status and outcomes regardless of individuals’ socially defined race or ethnic group. Scientists need to be more aware of their uncritical acceptance of social concepts of race and ethnicity when developing study questions and defining and analyzing different populations, says the PCP. The insidious influence of institutionalized and unrecognized racial bias can profoundly affect the direction and conclusions of scientific inquiry by affecting what questions are deemed worthy of study; who receives funding, mentoring, and training; and how the merits of study findings are judged. Weaknesses in data resources may thwart efforts to characterize populations in a scientifically meaningful way. Current data sets generally do not capture the variability within groups that is relevant for studies of disease vulnerability and treatment response, e.g., African Americans and immigrants of African origin are all categorized as black. Further, it is a fallacy to presume that experiences or characteristics of subpopulations are relevant only as they compare to those of non-Hispanic whites, who are as ancestrally and culturally diverse as Asians, Hispanics/Latinos, American Indians/Alaska Natives, or other government-defined populations. Researchers need to integrate information from local providers who interact with communities and local registries to improve the validity of national data sets. The emergence of molecular biology has led to the recognition that genes play an important role in cancer susceptibility, and in the effectiveness and side effects of available treatments. Ongoing research is attempting to shed light on the contributions of biology and genetics to the disparities in cancer burden and outcomes between different racial and ethnic populations. While genetic and biologic processes are rooted in the DNA inherited from one’s ancestors, they can be modified—sometimes dramatically—by external factors. Thus, genetic studies focus both on the inherited genome and changes to the genome acquired over the course of a lifetime. These acquired changes are likely due to a combination of genetic susceptibility, lifestyle factors, and environmental exposures. Similarly, the biological traits of individuals and their tumors are a function of both the inherited and acquired attributes of the DNA as well as cellular responses to the environment. Cultural and lifestyle factors can have independent and sometimes profound effects on cancer susceptibility and outcome. For example, culture and lifestyle may influence how individuals and population groups perceive health and disease, the priority of obtaining cancer screening and prevention services compared with other demands of daily life, and willingness to trust and engage the health care system. To improve cancer care and reduce cancer outcome disparities for immigrant, poor, minority, and other disadvantaged people in the nation’s rapidly changing population, it will be necessary to expand health care access and improve the quality of patient-provider interactions. In addition, myriad important research questions need to be answered. Many activities are under way to generate new knowledge and approaches to providing more effective and accessible care for all across the cancer continuum, but significant challenges remain. Recent legislative and related health care policy changes, together with  greater attention to patient and public education and communication needs, and a more diverse and culturally competent cancer care and research workforce have significant potential to improve both health care access and quality. However, as promising as these actions are for expanding health care access, many of the social determinants that negatively affect health—such as poverty, low educational attainment, inadequate housing, high risk occupations, toxic exposures, and poor diet—will persist into the foreseeable future for many in America. Numerous initiatives and interventions are being pursued to end the health impact of these factors. Although the use of race and ethnicity as variables or to define study populations in biomedical research is controversial, the concepts are ingrained in society and in research and will likely continue to be used for the foreseeable future.  Researchers must consider proper use and context when applying ethnicity, ancestry, or race as variables to ensure that these concepts enhance the value of the research and do not undermine translation of the research to improved human health. It was suggested that variables describing ethnicity, ancestry, or race should be constructed with regard to the specific research setting and hypothesis and should be clearly explained in published reports. If these concepts are being used as proxies, researchers should consider whether more specific measures could be developed. The PCP concluded new approaches to data collection were needed to better characterize populations. Existing vital statistics, census, public and private insurer, and cancer surveillance data were seriously compromised in their ability to accurately characterize populations in ways that would support improvements in cancer prevention, treatment, and population research and cancer care.  New approaches to characterizing populations and data collection were urgently needed, as were standardized definitions and data sets. Personalized medicine for all, already provided to a limited extent, is the ultimate goal in cancer care, but is not universally feasible or affordable in the near future. It needs to be institutionalized to the maximum extent possible, beginning with current knowledge, e.g., lymphoma and colorectal cancer subtyping, targeted anticancer drugs and biologics. Until a reality for all, research is needed to identify subpopulations at high risk of disease due to genetic/ancestral, biologic, sociocultural, and other factors that directly relate to risk or response to therapy, and then apply findings to each subpopulation. "As the cultural landscape of our nation continues its transformation, the one-size-fits-all approach to cancer screening guidelines, prevention, and treatment is no longer appropriate," said PCP Chair LaSalle D. Leffall, Jr., MD. "A more accurate understanding of cancer risk factors among diverse populations and improved training in cultural competency are critical steps toward reducing the national burden of cancer."

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