From Medical Innovation to Sociopolitical Crisis: How Racialized Medicine Has Shifted the Scope of Racial Discourse and its Social Consequences

Posted in Dissertations, Health/Medicine/Genetics, Media Archive, Social Science, United States on 2013-06-09 15:57Z by Steven

From Medical Innovation to Sociopolitical Crisis: How Racialized Medicine Has Shifted the Scope of Racial Discourse and its Social Consequences

Wesleyan University, Middletown, Connecticut
May 2013
51 pages

Danielle Antonia Craig

An essay submitted to the faculty of Wesleyan University in partial fulfillment of the requirements for the Degree of Bachelor of Arts with Departmental Honors in Sociology

Using a case study of a congestive heart failure, BiDil, patented in 2005 for use only in African Americans, I attempt to understand and analyze how the movement of racialized medicine has informed and effected American understandings of race, racial identity, and health.

Read the entire essay here.

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Ethnic minorities: defining ethnicity and race

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, United Kingdom on 2013-06-05 03:58Z by Steven

Ethnic minorities: defining ethnicity and race

The Scottish Public Health Observatory
Ethnic Minorities
Last Updated: 2012-03-06

Ethnicity

Ethnicity has been defined as:

“the social group a person belongs to, and either identifies with or is identified with by others, as a result of a mix of cultural and other factors including language, diet, religion, ancestry and physical features traditionally associated with race”. (1)

Ethnicity is essentially self-defined and may change over time. Classification of ethnicity is essentially pragmatic, based on categories that include common self-descriptions, are acceptable to respondents and that identify variations that are important for research or policy. There is increasing recognition that people may want to identify themselves with more than one ethnic group, and the “mixed” category introduced in the UK 2001 Census attempts to do this. The standard classification of ethnic group in the UK is that used in the 2011 Census (which was slightly different in each of the four countries of the UK). Ethnicity is different from country of origin, since many countries include more than one ethnic group.

Race

The concept of race is controversial. It is difficult to define a rationale for racial categories and there is no consistent agreement about an objective set of categories. Classifying individuals by their physical appearance and skin colour is unreliable and of questionable validity. Genetic studies have found some evidence of broad “continental” groups which are genetically similar.(2,3) However, there is little evidence that these correspond to commonly perceived racial categories.(4) There is wider genetic variation between individuals within one “racial” group (such as “white”) than there is between such “racial” groups (5)—indeed 93% to 95% of genetic variation is within population groups. Despite these difficulties, the term race is still widely used in legal and policy contexts…

Read the entire article here.

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Lung function, race and ethnicity: a conundrum

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2013-06-03 02:19Z by Steven

Lung function, race and ethnicity: a conundrum

European Respiratory Journal
Volume 41, Number 6  (June 1, 2013)
pages 1249-1250
DOI: 10.1183/09031936.00053913

Philip H. Quanjer
Deptartment of Pulmonary Diseases and Department of Paediatrics
Erasmus Medical Centre
Erasmus University, Rotterdam, The Netherlands

In this issue Braun et al. make a plea for an international workshop to review aspects of race and ethnicity in relation to lung function. This is a timely initiative, as many people struggle in epidemiological and genetic studies, and in clinical practice, with the interpretation of test results in an increasingly multi-ethnic society. Our notions of race derive from Blumenbach, who defined “Four varieties of mankind, one species” (adding a fifth variety in 1781). Definitions of “race” and “ethnic” are confusing and often used interchangeably. This ambiguity is reflected in the frequent use of race/ethnicity, a transitional concept adopted for use while phasing out “race” from the USA census. At this stage the USA census recognises two ethnicities: “Hispanic or Latino”, and “not Hispanic or Latino”, and five races; Hispanic/Latino individuals have a mixed European, African and native American ancestry. American citizens were allowed to self-identify with more than one race in 2000: 2.4% self-identified as multiracial. In sharp contrast, France passed a law in 1978 barring the government from collecting all racial and ethnic data (the Act prohibits collecting “any information that shows, directly or indirectly, racial or ethnic origins, political, philosophical or religious opinions, trade union membership, moral principles, or information that relates to health or sexual life” without either the written consent of the individual or an advance recommendation of the National Commission for Information Technology and Civil Liberties, which must first be approved by the Conseil d’État). The collection of data on race and ethnicity by governments serves administrative and statistical purposes; the classifications should not be interpreted as being scientific or anthropological in nature. However, this caveat is not heeded, and the classifications are widely used in everyday life, science and medicine, where race/ethnicity is used as a proxy for other phenomena.

Humans (Homo sapiens) originated in eastern Africa and migrated to the rest of the world. Analysis of microsatellite loci shows progressive loss of genetic diversity as our species grew and spread; genetic variability outside Africa is generally a subset of that within Africa. In general, a species is biologically defined as a group of similar organisms that can reproduce only with each other. Hence, genetically and biologically, Homo sapiens is one species, but with genetic diversity. Only 5–15% of genetic variation occurs between large groups living on different continents, the remaining variation occurring within such groups. A clustering algorithm applied to multilocus genotypes from worldwide human populations produced genetic clusters largely coincident with major geographic regions, suggesting that global human genetic diversity is a result of gradual variation and isolation by distance rather than major genetic discontinuities.

A widely held view among anthropologists, biologists and sociologists is that race is a socio-political construct based on the notion that groups can be demarcated on the basis of important and clear differences in phenotype, skin colour, ancestry, socio-economic status (SES) and geographical location, etc. Hoffman, a highly respected statistician who was particularly interested in the “negro problem” in the US, gave scientific racism its credibility and respectability. He posited that white people were at the top of the hierarchy and social order; “minority” racial groups were both biologically inferior and barriers to progress. One of Hoffman’s arguments was that “pure blacks” had “inferior vitality” because their vital capacity (VC) was found to be 6–12% smaller than in whites; this contributed to the belief that the inferior black race, that had a higher death rate, was doomed to extinction. The word “vital” in VC, so named by Hutchinson, and the smaller VC, led Hoffman to a value judgement. His views were contested by contemporary scientists, who pointed out that SES and inequalities in access to medical care, etc. should be taken into account in studies of biological differences between ethnic groups. Nevertheless, Hoffman’s views remained very influential; they have contributed to great atrocities and still affect personal interactions and social institutions.

Categorising subjects into racial/ethnic groups is done on the assumption that race/ethnicity is a proxy for genetic relatedness; this misrepresents genetic variation and leads to confounding. In general, in studies comparing differences in disease prevalence between two ethnic groups, if an unmeasured environmental variable (such as SES) co-varies in the same fashion as the proportion in one group, a racial difference might be due to this unmeasured variable. For example, in a study of differences in mortality between African and European Americans, Burney and Hooper concluded that the higher mortality in African Americans could only be explained by their lower forced VC, reminiscent of the views of Hoffman. Correlation does not prove causality: direct analysis of the relevant gene or causative factor is the only reliable way to evaluate risk in an individual.

Race, ethnicity and ancestral categories falsely suggest genetic homogeneity within and heterogenity between groups; they ignore the genetic variability within groups, gene–environment interactions and differences due to socially mediated mechanisms. Therefore, many scientists advocate abolishing such categorisation in research, versus those who believe there is still a role for the continued use of self-identified race and ethnicity in biomedical and genetic research…

Read the entire article here.

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Defining race/ethnicity and explaining difference in research studies on lung function

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2013-06-03 01:30Z by Steven

Defining race/ethnicity and explaining difference in research studies on lung function

European Respiratory Journal
Volume 41, Number 6  (June 1, 2013)
pages 1362-1370
DOI: 10.1183/09031936.00091612

Lundy Braun, Royce Family Professor in Teaching Excellence and Professor of Medical Science and Africana Studies
Brown University

Melanie Wolfgang
Brown University

Kay Dickersin, Professor, Director, Center for Clinical Trials
Johns Hopkins Center for Global Health
U.S. Department of Housing and Urban Development

The 2005 guidelines of the American Thoracic Society/European Respiratory Society recommend the use of race- and/or ethnic-specific reference standards for spirometry. Yet definitions of the key variables of race and ethnicity vary worldwide. The purpose of this study was to determine whether researchers defined race and/or ethnicity in studies of lung function and how they explained any observed differences.

Using the methodology of the systematic review, we searched PubMed in July 2008 and screened 10 471 titles and abstracts to identify potentially eligible articles that compared “white” to “other racial and ethnic groups”.

Of the 226 eligible articles published between 1922 and 2008, race and/or ethnicity was defined in 17.3%, with the proportion increasing to 70% in the 2000s for those using parallel controls. Most articles (83.6%) reported that “other racial and ethnic groups” have a lower lung capacity compared to “white”; 94% of articles failed to examine socioeconomic status. In the 189 studies that reported lower lung function in “other racial and ethnic groups”, 21.8% and 29.4% of explanations cited inherent factors and anthropometric differences, respectively, whereas 23.1% of explanations cited environmental and social factors.

Even though researchers sought to determine differences in lung function by race/ethnicity, they typically failed to define their terms and frequently assumed inherent (or genetic) differences.

Read or purchase the article here.

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Winning the Race

Posted in Articles, Barack Obama, Health/Medicine/Genetics, Identity Development/Psychology, Media Archive, Politics/Public Policy, United States on 2013-06-01 18:45Z by Steven

Winning the Race

NYU Alumni Magazine
Fall 2012

Andrea Crawford

As the first African-American president runs for reelection, researchers examine the subliminal influence of political ads

 In 1990, longtime North Carolina Senator Jesse Helms was trailing challenger Harvey Gantt, an African-American who supported affirmative action, when the Helms campaign produced the infamous “hands” commercial. As the camera focused on the hands of a white person holding a letter, the narrator said: “You needed that job, and you were the best qualified, but they had to give it to a minority.” Helms went on to win the election.

In another famous appeal, an ad for the 1988 Republican presidential candidate George H.W. Bush featured the menacing mug shot of convicted murderer Willie Horton. The spot explained how the African-American had committed assault while on furlough from a Massachusetts prison—a program supported by Michael Dukakis, the state’s governor and the Democratic presidential candidate. Bush won the presidency in a landslide.

It was into this environment that Charlton McIlwain, associate professor of media, culture, and communication at the Steinhardt School of Culture, Education, and Human Development, came of age. These types of appeals clearly work, he thought, and he set out to determine how and why. Around the same time, David Amodio was first exploring research that showed self-avowed egalitarians actually exhibited unconscious biases. Now an NYU associate professor of psychology and neural science, he began his career asking how such automatic types of prejudice could exist in opposition to one’s beliefs. Until recently, these kinds of questions were complicated by a reliance on often-flawed self-reports—people simply feel uncomfortable admitting bias and are sometimes not even conscious of it. But today, McIlwain and Amodio have come together in a timely pursuit. As the first African-American president runs for reelection, they are investigating the power of racial appeals in political ads by turning to neuroscience…

Read the entire article here.

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Race Is Not Biology

Posted in Articles, Health/Medicine/Genetics, Media Archive on 2013-05-25 01:52Z by Steven

Race Is Not Biology

The Atlantic
2013-05-23

Merlin Chowkwanyun
Departments of History and Public Health
University of Pennsylvania

How unthinking racial essentialism finds its way into scientific research

During the past two weeks, much outrage has arisen over former Heritage Foundation staffer Jason Richwine’s Harvard doctoral dissertation, which speculated that IQ differences between “Hispanic” and “non-Hispanic’ populations were genetically rooted. The claims mirrored those of Richard Herrnstein and Charles Murray’s scurrilous The Bell Curve: Intelligence and Class Structure in American Life, which made similar claims about the intelligence of blacks. (Murray receives thanks in Richwine’s dissertation acknowledgments and wrote recently in National Review Online in defense of Richwine.)

The fury continues. In the past couple days, a group of scholars has circulated a petition excoriating Harvard for approving the dissertation and condoning scientific racism in the process. Their petition situates Richwine within an odious lineage stretching back to the era of eugenics and charges that his work rests on shoddy intellectual foundations. (These scholars are right: the late J. Phillipe Rushton, best known for claiming associations among race, brain size, and penis length, is cited by Richwine.) A group of 1,200 Harvard University students has also put together their own petition.

But the attacks on Richwine are missing something far more insidious than neo-eugenic claims about innately inferior intelligence between races. The backlash against Richwine and Murray, after all, gives some indication that their views are widely considered beyond the respectable pale in the post- Bell Curve era. Richwine and Murray are really extreme branches of a core assumption that is much more pervasive and dangerous because it isn’t necessarily racist on the surface: the belief in biological “races.” This first assumption is required to get to claims like Richwine’s, which argue that between Race A and Race B, differences exist (in “intelligence” or whatever else) that are grounded in the biological characteristics of the races themselves. Public outcry always greets the second Richwine-Murray-esque claim. But the first assumption required to reach it is more common and based on as shaky an intellectual foundation, even as it continues to escape equal scorn…

…In the past decade, a small but growing sub-field, anchored in multiple disciplines, has begun criticizing the unthinking racial essentialism that finds its way into scientific research more frequently than one might think, especially in medicine and public health orbits. One exemplar is the article ” “Racial Categories in Medical Practice: How Useful Are They?” which appeared in PLOS Medicine. Its authors first review the degree to which common conceptions of race have in fact historically shaped by administrative imperatives (not biological reality). They then issue a warning on the use of race as a proxy, writing that “once race is presumed, the ways in which multiple genetic inheritances interact with the environment within that individual seem to disappear. Clinical clues can become invisible.”…

Read the entire article here.

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The Material Gene: Gender, Race, and Heredity after the Human Genome Project

Posted in Books, Health/Medicine/Genetics, Media Archive, Monographs on 2013-05-08 14:51Z by Steven

The Material Gene: Gender, Race, and Heredity after the Human Genome Project

New York University Press
May 2013
303 pages
Cloth ISBN: 9780814790687

Kelly E. Happe, Assistant Professor of Communication Studies and Women’s Studies
University of Georgia

In 2000, the National Human Genome Research Institute announced the completion of a “draft” of the human genome, the sequence information of nearly all 3 billion base pairs of DNA. Since then, interest in the hereditary basis of disease has increased considerably. In The Material Gene, Kelly E. Happe considers the broad implications of this development by treating “heredity” as both a scientific and political concept. Beginning with the argument that eugenics was an ideological project that recast the problems of industrialization as pathologies of gender, race, and class, the book traces the legacy of this ideology in contemporary practices of genomics. Delving into the discrete and often obscure epistemologies and discursive practices of genomic scientists, Happe maps the ways in which the hereditarian body, one that is also normatively gendered and racialized, is the new site whereby economic injustice, environmental pollution, racism, and sexism are implicitly reinterpreted as pathologies of genes and by extension, the bodies they inhabit. Comparing genomic approaches to medicine and public health with discourses of epidemiology, social movements, and humanistic theories of the body and society, The Material Gene reworks our common assumption of what might count as effective, just, and socially transformative notions of health and disease.

Contents

  • Acknowledgments
  • Preface
  • 1. Ideology and the New Rhetoric of Genomics
  • 2. Heredity as Ideology: Situating Genomics Historically
  • 3. Genomics and the Reproductive Body
  • 4. Genomics and the Racial Body
  • 5. Genomics and the Polluted Body
  • 6. Toward a Biosociality without Genes
  • Notes
  • Bibliography
  • Index
  • About the Author
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Race, Policy, and Culture: An Identity Crisis for Sickle Cell Disease in Brazil

Posted in Brazil, Caribbean/Latin America, Dissertations, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science on 2013-04-24 03:45Z by Steven

Race, Policy, and Culture: An Identity Crisis for Sickle Cell Disease in Brazil

Melissa S. Creary, MPH, Doctoral Candidate
Graduate Institute of Liberal Arts
Emory University

Professor Howard Kushner, Chair
Professor Jeffrey Lesser, Co-Chair

Abstract of Dissertation Prospectus

In 2001, Cândida and Altair, a married couple, started a national organization to increase the rights of sickle cell patients, and thereby gave birth to the sickle cell disease (SCD) movement in Salvador, Bahia, Brazil. Cândida, the wife, who carries sickle cell trait, now heads the municipal SCD unit for Salvador. She, with light skin and wavy brown hair, might be considered white in the United States, but when I asked her why she had created the organization she responded: “Eu sou negra!” (I am black). Her darker-skinned husband, who considers himself a black activist, coordinates the national SCD association and helped craft policy for SCD. As a family, Cândida and Altair shift between multiple roles: genetic carrier, parent, government official, and SCD advocate. Together these two activists have helped shape the racial discourse on SCD by associating the disease with “blackness” on the individual, organizational, and national level.

Sickle cell disease is the most common hereditary hematologic disorder in Brazil and throughout the world. In Brazil, the estimated prevalence is between 2% and 8% of the population. My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, this project analyzes how the Brazilian state, advocacy, and patient communities within the nation have, at times, branded SCD an Afro-Brazilian disease. At the state level, I’ll describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. On the organizational level, I’ll investigate the alignment of the SCD movement with the black movement of Brazil and the decisions made by some of these organizations to influence health policy using anti-racist motives. Lastly, I will explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease.

With this framework in mind, I aim to answer the question—How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? This multi-level identity crisis is in constant contestation of competing racial frameworks at the micro, meso, and macro level. I will manage these complexities with a flexible notion of biological citizenship that considers frameworks of biology, social determinants, and policy in ways that is uniquely responsive to the cultural and historical specifics of how race, identity, health, and legitimacy operate in Brazil.

To do this, I will spend ten months in Brasília, Salvador, and Rio de Janeiro investigating the construction of sickle cell disease on three different levels: advocacy organization around patient rights, individual patient and family experience, and governmental policy development and implementation. To assess the social, geographical, and political context of my subjects, I will use a series of historical and qualitative methodologies.

My work will deepen and re-think narratives of Brazil’s racial history through the lens of SCD. It also stands to generate a better understanding of the historical genealogy as it informs the current implementation of SCD policy. This analysis can provide lessons to both Brazil and the US on how future policy can be designed. Specifically, whether policy developed around populations (or sub-set of populations) can be measured against and be as effective as policy developed around disease.

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Issue Brief – Race and Ethnicity Matters: Concepts and Challenges of Racial and Ethnic Classifications in Public Health

Posted in Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Reports, United States on 2013-04-22 02:17Z by Steven

Issue Brief – Race and Ethnicity Matters: Concepts and Challenges of Racial and Ethnic Classifications in Public Health

The Connecticut Health Disparities Project
Connecticut Department of Public Health
Hartford, Connecticut
Fall 2007

Alison Stratton, PhD

Ava Nepaul, MA

Margaret Hynes, PhD, MPH

Race, Ethnicity and Health Disparities: An Introduction

Extraordinary improvements in the health of all Americans have been made since the early 20th century. However, not everyone benefits equally from these advances in the public’s health. Nor is every group equally burdened by the leading causes of death, which in the United States today are no longer infectious diseases, but rather chronic diseases such as heart disease, cancer, stroke, and diabetes.

“Health disparities”—those avoidable differences in health among specific population groups that result from cumulative social disadvantages (Stratton, Hynes, and Nepaul 2007)—exist for many minority populations in the United States. As used here, “minorities” are those populations in a society that are in a position of cultural and political non-dominance and disadvantage. As a result, they may experience reduced healthcare quality and access, and increased rates of disease, disability, and death compared to the overall U.S. population. For example, U.S. minority populations might include racial and ethnic minorities, limited English proficiency populations, people living in poverty, and homeless persons.

The Connecticut Health Disparities Project at the Department of Public Health (DPH), in conjunction with other agencies and programs, is taking a new look at health disparities and the collection of “race” and “ethnicity” data. Differential treatment of people based on the ideas of race and ethnicity is a social reality for all Americans (Nepaul, Hynes and Stratton 2007) and has a large impact on Americans’ health and general well-being. In order to track the health impact of these ideas of race and ethnicity, health departments at all levels need to collect consistent and comprehensive health information using racial and ethnic classification tools.

However, race and ethnicity data alone are not sufficient to accurately depict health disparities (Nepaul, Hynes and Stratton 2007). In fact, social structural factors (such as poverty, [low income environments, socioeconomic status and social supports) are equally if not more important as fundamental causes of health disparities (Link and Phelan 1995).

In this Issue Brief, then, we seek to address these questions: How have people defined and used the concepts of “race,” and “ethnicity?” How useful or consistent is our current collection of racial and ethnic data in the effort to reduce and eliminate health disparities? What other factors have an impact on people’s health? Below we: 1) introduce the history, theoretical foundations, and uses of the ideas of “race” and ethnicity” in public health data collection; 2) discuss why they are difficult, yet necessary, concepts to use in studying health in the United States; and 3) stress the need for inclusion of socio-economic and other demographic factors in the collection and analysis of health data to more fully illuminate health disparities…

…Race and ethnicity are neither scientifically reliable nor valid categories, and assignments to racial or ethnic categories are often based on observer biases, changing situational identities, and historical-political vagaries (Lee 1993; Kaplan and Bennett 2003; Williams 2007). In real life, people do not have only one fixed racial or ethnic identity which remains the same over time and space and that can be accurately measured. A further complication inherent in categorization is that people embrace biracial, multiracial, and multi-ethnic identities, which makes the categories even more difficult to sustain, compare, and enumerate. Current racial and ethnic categories for federal data collection are not sensitive to the complex intra-group heterogeneity that exists in the nation (Kaplan and Bennett 2003; Office of Management and Budget 1997).

Despite such inconsistencies in use and logic, the ideology of race is deeply ingrained in American culture. People acting on these beliefs and practices create a social reality for themselves and others based in part on these perceived racial or ethnic differences between people. This reality includes the structures, beliefs and practices of health care, medicine and economics that contribute to health disparities for minority populations (Williams, Lavizzo-Mourey and Warren 1994)…

Read the entire report here.

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Age of First Cigarette, Alcohol, and Marijuana Use Among U.S. Biracial/Ethnic Youth: A Population-Based Study

Posted in Articles, Health/Medicine/Genetics, Media Archive, Social Work, United States on 2013-04-21 15:54Z by Steven

Age of First Cigarette, Alcohol, and Marijuana Use Among U.S. Biracial/Ethnic Youth: A Population-Based Study

Addictive Behaviors
Volume 38, Issue 9, September 2013
pages 2450–2454
DOI: 10.1016/j.addbeh.2013.04.005

Trenette T. Clark, Associate Professor of Social Work
University of North Carolina, Chapel Hill

Otima Doyle, Assistant Professor of Social Work
University of Illinois, Chicago

Amanda Clincy
University of North Carolina, Chapel Hill

Highlights

  • We found an intermediate biracial phenomenon.
  • White-American Indian youth start smoking cigarettes earlier than all groups.
  • White-Asian youth begin smoking marijuana and drinking at earlier ages than Whites.
  • White-Asian youth engaged in all substances at earlier ages than Asian youth.

This study examines age of first cigarette, alcohol, and marijuana use among self-identified biracial youth, using data from the National Longitudinal Study of Adolescent Health (Add Health). We found an intermediate biracial phenomenon in which some biracial youth initiate substance use at ages that fall between the initiation ages of their 2 corresponding monoracial groups. When controlling for the covariates, our findings show White-Asian biracial youth begin smoking marijuana and drinking alcohol at earlier ages than Whites and engaging in all forms of substance use at earlier ages than Asian youth. Results indicate White-American Indian youth start smoking cigarettes at earlier ages than all biracial and monoracial groups. Our findings underscore the need for future research to examine substance-use initiation and progression among biracial/ethnic youth.

Read or purchase the article here.

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