Mixed Race Studies

Race and ancestry in biomedical research: exploring the challenges

Genome Medicine 2009
Volume 1, Number 8 (2009-01-21)
DOI: 10.1186/gm8

Timothy Caulfield
Faculty of Law and School of Public Health Research, Health Law Institute
University of Alberta

Stephanie M Fullerton
Department of Medical History and Ethics and Department of Genome Sciences
University of Washington School of Medicine

Sarah E Ali-Khan
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Laura Arbour
Faculty of Medicine, Island Medical Program
University of British Columbia

Esteban G. Burchard
Department of Biopharmaceutical Sciences and Department of Medicine, Divisions of Pharmaceutical Sciences and Pharmacogenetics, Pulmonary & Critical Care Medicine, and Clinical Pharmacology
University of California, San Francisco

Richard S. Cooper
Department of Epidemiology & Preventive Medicine, Stritch School of Medicine
Loyola University

Billie-Jo Hardy
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Simrat Harry
Faculty of Law and School of Public Health Research, Health Law Institute
University of Alberta

Robyn Hyde-Lay
Genome Alberta, Calgary, Alberta, Canada

Jonathan Kahn
Hamline University School of Law

Rick Kittles
Department of Medicine, Section of Genetic Medicine, Department of Human Genetics
University of Chicago

Barbara A. Koenig
Program in Professionalism & Bioethics
Mayo College of Medicine

Sandra S. J. Lee
Stanford Center for Biomedical Ethics
Stanford University Medical School

Michael Malinowski
Paul M Hebert Law Center
Louisiana State University, Baton Rouge

Vardit Ravitsky
Department of Medical Ethics and Center for Bioethics
University of Pennsylvania, Philadelphia

Pamela Sankar
Department of Medical Ethics and Center for Bioethics
University of Pennsylvania, Philadelphia

Stephen W. Scherer
for Applied Genomics, The Hospital for Sick Children, and Department of Molecular Genetics
University of Toronto

Béatrice Séguin
Leslie Dan School of Pharmacy; Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network
University of Toronto

Darren Shickle
Leeds Institute of Health Sciences,
University of Leeds, United Kingdom

Guilherme Suarez-Kurtz
Pharmacology Division
Instituto Nacional de Câncer, Rio de Janeiro, Brazil

Abdallah S. Daar
Program on Life Sciences Ethics and Policy, McLaughlin-Rotman Centre for Global Health, University Health Network; Department of Public Health Sciences and of Surgery; McLaughlin Centre for Molecular Medicine; Department of Medicine
University of Toronto

The use of race in biomedical research has, for decades, been a source of social controversy. However, recent events, such as the adoption of racially targeted pharmaceuticals, have raised the profile of the race issue. In addition, we are entering an era in which genomic research is increasingly focused on the nature and extent of human genetic variation, often examined by population, which leads to heightened potential for misunderstandings or misuse of terms concerning genetic variation and race. Here, we draw together the perspectives of participants in a recent interdisciplinary workshop on ancestry and health in medicine in order to explore the use of race in research issue from the vantage point of a variety of disciplines. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action, including restrictions resulting from commercial or regulatory considerations, the difficulty in presenting precise terminology in the media, and drifting or ambiguous definitions of key terms.

Correspondence

Recent advances in biomedical research promise increasing insights into complex contributions to traits and diseases, and there is hope that these will lead to global health benefits [1,2] . Analytical and social-justice considerations both recommend thoughtful assessment of the role of social identity, particularly racial or ethnic identity, in the design, conduct and dissemination of clinical and basic science research. Controversies ranging from James Watson’s comments on racial differences in intelligence [3] to the adoption of racially targeted pharmaceuticals, such as the African-American heart-failure drug BiDil [4-7] , remind us that use of the concept of race in biomedical research can have far-reaching, often unanticipated social consequences.

The problem of race in scientific research is not a new one, and the issue seems to perpetually reappear and remain fundamentally unresolved [8] . We are, however, entering a new era in which the fruits of initiatives, such as the Human Genome Project [9,10] , the International Haplotype Map Project [11] , and the recently proposed 1000 Genomes Project [12] , promise to elaborate more fully than ever before the nature and extent of human genetic variation and its relation to social identity. A recent interdisciplinary workshop, ‘Ancestry in health and medicine; expanding the debate’, hosted by the Alberta Health Law Institute and the McLaughlin-Rotman Centre for Global Health, in Toronto, Canada, sought to debate the current status and concerns surrounding these new scientific data, how we relate genetic variation to individual and population-level differences in observable traits, and what this might mean for the effective addressing of significant disparities in health status and disease. A central motivating consideration was how best to secure the anticipated benefits of genetic and related forms of biomedical research in the face of inevitable misunderstandings or misuse concerning genetic variation and race.

Here, we draw together the perspectives of the scholars who participated in the workshop, who have considered the race issue from the vantage point of a variety of disciplines: anthropology, bioethics, clinical medicine, ethical, social, cultural studies, genetic epidemiology, genome sciences, global heath research, law and the social sciences. We review the nature of the race controversy in the context of biomedical research and highlight several challenges to policy action…

Read the entire correspondence here.

Prematurity and Low Birth Weight as Potential Mediators of Higher Stillbirth Risk in Mixed Black/White Race Couples

Journal of Women’s Health
Volume 19, Issue 4 (2010-04-26)
pages 767–773.
DOI:  10.1089/jwh.2009.1561

Katherine J. Gold, M.D., M.S.W., M.S.
University of Michigan, Ann Arbor

Sonya M. DeMonner, M.P.H.
University of Michigan, Ann Arbor; U.S. Department of Veterans Affairs

Paula M. Lantz, Ph.D.
University of Michigan, Ann Arbor

Rodney A. Hayward, M.D.
University of Michigan, Ann Arbor; U.S. Department of Veterans Affairs

Objective: Although births of multiracial and multiethnic infants are becoming more common in the United States, little is known about birth outcomes and risks for adverse events. We evaluated risk of fetal death for mixed race couples compared with same race couples and examined the role of prematurity and low birth weight as potential mediating risk factors.

Methods: We performed a retrospective cohort analysis using data from the 1998–2002 California Birth Cohort to evaluate the odds of fetal death, low birth weight, and prematurity for couples with a mother and father who were categorized as either being of same or different racial groups. Risk of prematurity (birth prior to 37 weeks gestation) and low birth weight (<2500 g) were also tested to see if the model could explain variations among groups.

Results: The analysis included approximately 1.6 million live births and 1749 stillbirths. In the unadjusted model, compared with two white parents, black/black and black/white couples had a significantly higher risk of fetal death. When all demographic, social, biological, genetic, congenital, and procedural risk factors except gestational age and birth weight were included, the odds ratios (OR) were all still significant. Black/black couples had the highest level of risk (OR 2.11, CI 1.77-2.51), followed by black mother/white father couples (OR 2.01, CI 1.16-3.48), and white mother/black father couples (OR 1.84, CI 1.33-2.54). Virtually all of the higher risk of fetal death was explainable by higher rates of low birth weight and prematurity.

Conclusions: Mixed race black and white couples face higher odds of prematurity and low birth weight, which appear to contribute to the substantially higher demonstrated risk for stillbirth. There are likely additional unmeasured factors that influence birth outcomes for mixed race couples.

Read the entire article here.

The Correspondence Between Interracial Births and Multiple-Race Reporting

American Journal of Public Health
Volume 92, Number 12 (December 2002)
pages 1976–1981

Jennifer D. Parker, PhD
Office of Analysis, Epidemiology, and Health Promotion
National Center for Health Statistics, Hyattsville, Maryland

Jennifer H. Madans, PhD, OD Co-Deputy Director / OD Associate Director for Science / OPBL Associate Director
Office of Surveillance, Epidemiology, and Laboratory Services
Centers for Disease Control

• Objectives. Race-specific health statistics are routinely reported in scientific publications; most describe health disparities across groups. Census 2000 showed that 2.4% of the US population identifies with more than 1 race group. We examined the hypothesis that multiple-race reporting is associated with interracial births by comparing parental race reported on birth certificates with reported race in a national health survey.
• Methods. US natality data from 1968 through 1998 and National Health Interview Survey data from 1990 through 1998 were compared, by year of birth.
• Results. Overall multiple-race survey responses correspond to expectations from interracial births. However, there are discrepancies for specific multiple-race combinations.
• Conclusions. Projected estimates of the multiple-race population can be only partially informed by vital records. (Am J Public Health. 2002;92:1976–1981)

Eliminating racial disparities is an important national health objective; as a result, many policy and summary reports report race-specific health statistics to monitor trends and identify problem areas. Scientific research papers analyze race-specific data in hopes of understanding the disparities and, ultimately, finding ways to reduce them.

In 1997, the Office of Management and Budget (OMB) issued a revision to the long-standing directive for the collection of race and ethnicity data within the federal statistical system, known as OMB-15. Among other modifications designed to reflect the changing racial and ethnic profile in the United States, the 1997 standard requires that new data collections allow individuals to report 1 or more race groups when responding to a query on their racial identity. Analysts examining previously available data hypothesized that up to 2% of respondents to surveys or administrative collections would report 2 or more groups under the new standard. About 2.4% of the US population, nearly 7 million people, reported 2 or more race groups in the 2000 decennial census.

The impact of multiple-race reporting on statistics used for health policy and research is not yet known. It is likely that multiple-race respondents differ from each other and from their single-race counterparts on many measures of health and access to care. The extent of these differences will depend on many factors. All considered, multiple-race reporting will influence public health policy for both the newly tabulated multiple-race groups and the remaining single-race groups, which will be changed as a result of a wider choice of racial identification. Interracial births have increased over the past 3 decades. In the early 1970s, 1.4% of infants were born to parents who reported different race groups; by 1998, this percentage had increased to 4.3%. It would be reasonable to assume that individuals with parents of different races would identify with and report more than 1 group when responding to surveys and other data collections. However, how interracial births affect multiple-race reporting is unclear.

This report compares year- and race-specific national estimates of interracial births with year-specific survey estimates of multiple-race reporting. We compared the distribution of parental race for births from 1968 through 1998 with the reporting of more than 1 race for survey respondents in the 1990–1998 National Health Interview Survey (NHIS) who were born from 1968 through 1998. If all individuals with interracial parents reported both race groups on the survey, we would expect the distribution of multiple-race responses on the NHIS to coincide with the distribution of interracial births from birth records for the appropriate age–year combination. For example, the race distribution for births in 1970 would correspond to the race reported among the respondents who were aged 20 years in the 1990 NHIS, who were 21 in the 1991 NHIS, and so on. We would also expect that the inclusion of individuals with 1 or both parents who themselves identify with more than 1 race group may increase the percentages of multiple-race responses in the NHIS even more. Although neither the NHIS nor the birth certificate were developed to provide national race distributions, both data sources are routinely used to provide national estimates of races-specific health outcomes…

Read the entire article here.

Unraveling the Concept of Race in Brazil: Issues for the Rio de Janeiro Cooperative Agreement Site

Journal of Psychoactive Drugs
Volume 30,  Issue 3, 1998 
Special Issue: HIV/AIDS Interventions For Out-of-Treatment Drug Users
pages 255-260
DOI: 10.1080/02791072.1998.10399700

Hilary L. Surratt
The Center for Drug and Alcohol Studies
University of Delaware

James A. Inciardi (1939-2009), Co-Director of the Center for Drug and Alcohol Studies; Professor of Sociology and Criminal Justice
University of Delaware

Scholars throughout the Americas have spent much of the 20th century studying race and its meaning in Brazil. Racial identities in Brazil are dynamic concepts which can only be understood if situated and explored within the appropriate cultural context. Empirical evidence of the fluidity of racial identification quickly came to the authors’ attention within the context of a prevention initiative targeting segments of the Rio de Janeiro population at high risk for HIV/AIDS. Because the main objective of this program was to slow the spread of AIDS through an intervention designed to promote behavioral change, comparisons of client data at the baseline and follow-up assessments for the core of the analyses. Through quality control procedures used to link client information collected at different points in time, it was revealed that 106 clients, or 12.5% of the follow-up sample, had changed their racial self-identification. The authors’ attempts to engage project staff in a dialogue about the fluidity of racial identity among these clients have provided some insight into what might be called the “contextual redefinition” of race in Brazil. Within the framework of this study, the ramifications of this phenomenon are clear. Racial comparisons of HIV risk, sexual activity, drug use, and behavioral change, which are part and parcel of U.S.-based research, would appear to be of little utility in this setting.

Read or purchase the article here.

Tell Me a Story: Genomics vs. Indigenous Origin Narratives

GeneWatch
Council for Responsible Genetics
Volume 26, Number 4, Religion & Genetics (Aug-Oct 2013)
pages 11-13

Kim TallBear, Associate Professor of Anthropology
University of Texas, Austin

On April 13, 2005 the Indigenous Peoples’ Council on Biocolonialism issued a press release opposing the Genographic Project, which aimed to sample 100,000 indigenous and other traditional peoples to “trace the migratory history of the human species” and “map how the Earth was populated.” IPCB critiques Genographic, and the Human Genome Diversity Project before it, as the contemporary continuation of colonial, extractive research. The analysis is also a fundamental historical examination of Western science. IPCB foregrounds the intellectual and institutional authority that science, a powerful tool of colonizing states, has to appropriate indigenous bodies – both dead and living – material cultural artifacts, and indigenous cultural narratives in the service of academic knowledge production.

Critics point out that such knowledge rarely serves indigenous peoples’ interests and can actively harm them. In the 19th and early 20th centuries massacre sites and graves were plundered for body parts to be used in scientific investigations that inform today’s anthropological and biological research on Native Americans. Throughout the 20th century, indigenous peoples around the world witnessed the too common practice of “helicopter research” – quick sampling without return of results or benefit to subjects. Indigenous DNA samples and data taken in earlier decades when ethics standards were lax continue to be used and cited in contemporary investigations, bringing those injustices into the 21st century. And new, more ethical research still takes time from other pressing projects and needs. Informed community review and collaboration with researchers will increase community benefit, but informed participation has costs. It takes resources to build capacity to sit at the table as equals instead of as vulnerable subjects – as simply the raw materials for science…

Read the entire article here.

New recognition for first black U.S. doctor with medical degree

American Medical News
2010-11-08

Kevin B. O’Reilly

Dr. James McCune Smith’s descendants unveiled a new headstone in a ceremony to commemorate his achievements as a physician, essayist and abolitionist.

The New York City burial site of the nation’s first black medical degree-holder received a new headstone—one provided by his white descendants in a recent public ceremony.

Dr. James McCune Smith received his medical degree at the University of Glasgow in Scotland in 1837, forced to go overseas for his education due to U.S. colleges’ racist admissions policies. Historians say the training provided at European medical schools at that time was, ironically, superior to that offered in the U.S.

Greta Blau, Dr. Smith’s great-great-great-granddaughter, learned that she was descended from the doctor after finding his name inscribed in a family Bible. She recognized the name from a history paper she had written years earlier in college.

After confirming the family connection through genealogical research, Blau learned that Dr. Smith’s five surviving children passed, lived and identified as white in society after he died in 1865.

Dr. Smith treated both black and white patients in New York City. He was the first black doctor to write a medical case report—presented to the New York Medical and Surgical Society in 1840.

He also was the first black physician to have a medical scientific paper published, in the New York Journal of Medicine in 1844, and was a prominent essayist who attacked slavery and racial theories positing blacks’ inferiority. He was a friend of Frederick Douglass and wrote the introduction to his 1855 autobiography…

Read the entire article here.

Is race erased? Decoding race from patterns of neural activity when skin color is not diagnostic of group boundaries

Social Cognitive and Affective Neuroscience
Volume 8, Issue 7 (October 2013)
pages 750-755
DOI: 10.1093/scan/nss063

Kyle G. Ratner
Department of Psychology
New York University

Christian Kaul
Department of Psychology and Center for Neural Science
New York University

Jay J. Van Bavel, Assistant Professor of Social Psychology
New York University

Several theories suggest that people do not represent race when it does not signify group boundaries. However, race is a visually salient social category associated with skin tone and facial features. In the current study, we investigated whether race could be decoded from distributed patterns of neural activity in the fusiform gyri and early visual cortex when visual features that often co-vary with race were orthogonal to group membership. To this end, we used multivariate pattern analysis to examine an fMRI dataset that was collected while participants assigned to mixed-race groups categorized own-race and other-race faces as belonging to their newly assigned group. Whereas conventional univariate analyses provided no evidence of biased race-based responses in the fusiform gyri or early visual cortex, multivariate pattern analysis suggested that race was represented within these regions. Moreover, race was represented in the fusiform gyri to a greater extent than early visual cortex, suggesting that the fusiform gyri results do not merely reflect low-level perceptual information (e.g., color, contrast) from early visual cortex. The findings indicate that patterns of activation within specific regions of the visual cortex may represent race even when overall activation in these regions is not driven by racial information.

Read the entire article here.

What’s Wrong with Race-Based Medicine?: Genes, Drugs, and Health Disparities

Minnesota Journal of Law, Science & Technology
Volume 12, Issue 1 (Winter 2011)
pages 1-21

Dorothy E. Roberts, George A. Weiss University Professor of Law and Sociology; Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights
University of Pennsylvania

In June 2005, the Food and Drug Administration (FDA) announced a historic decision: it approved the first pharmaceutical indicated for a specific race. BiDil, a combination drug that relaxes the blood vessels, was authorized to treat heart failure in self-identified black patients. BiDil had been tested in the African-American Heart Failure Trial (A-HeFT) launched in 2001. A-HeFT enrolled 1,050 subjects suffering from advanced heart failure, all self-identified African Americans. A-HeFT showed that BiDil worked; in fact, it worked so spectacularly that the trial was stopped ahead of schedule. BiDil in-creased survival by an astonishing 43 percent. Hospitalizations were reduced by 39 percent. It was a momentous accomplishment for Jay Cohn, the University of Minnesota cardiologist who invented BiDil and had pioneered vasodilators as an important treatment for heart failure.

Given evidence of BiDil’s efficacy, but little evidence that race mattered to its efficacy, the FDA should have made one of two decisions: reject the request for race-specific approval or approve BiDil for all heart failure patients, regardless of race. Instead, the FDA put race at the center of its decision, sparking controversy and paving the way for a new generation of racial medicines.

No one is complaining that BiDil is available to people who will benefit from it. The problem is that BiDil was made available on the basis of race. Its racial label elicited three types of criticism: scientific, commercial, and political. I will discuss the first two controversies en route to what I consider the main problem with race-based medicine, its political implications. By claiming that race, a political grouping, is important to the marketing of drugs and that race-based drugs can reduce health disparities, which are caused primarily by social inequality, those who promote racialized medicine have made it a political issue. Yet, having made these political claims, these very advocates answer criticism by saying that we must put aside social justice concerns in order to improve minority health. This article explains why marketing pharmaceuticals on the basis of race is more likely to worsen racial inequities than cure them…

Read the entire article here.

Discrimination Down to a Science

Hyphen Magazine
Issue 26, Spring 2013 (The South)

Dharushana Muthulingam, Health Editor and a resident physician at Kaiser Permanente in Oakland

How genetic data shapes science and medicine and what is being done to change it.

In the 1997 science fiction movie Gattaca, set in a future of genetically engineered humans, Vincent Freeman — the unfortunate product of “natural conception” — declared: “I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science.” It is a touching picture of dystopia, where we have moved beyond our current social myopias, only to find new, more elaborate ones.

In 1997, the race to map the human genome — the entire hereditary information of humans — was in full force. It held the promise of better medicine, better technology and a better idea of where we come from. But a long history of discrimination by social status and skin color still had an unwitting effect in shaping science.

Genetics has only recently had concrete applications in medicine and everyday life. By the mid-2000s, the price of genetic testing decreased steeply enough to make it usable outside of research. Now, we can identify which specific breast cancer variant will respond to a certain treatment or predict if an HIV medication will cause a bad reaction.

The potential for Personalized Medicine was born on these few successes, with slick promises of customized treatment for what ails you. This has also improved the well-being of a handful of stockholders, with the nascent industry estimated to be worth $232 billion and growing 11 percent annually…

…To its credit, the National Institute of Health has repeatedly tried to tie funding to increasing diversity in research subjects since the 1970s, with mixed results. This long shadow of history and the general societal conversation of race still shape the culture of how scientists approach race and which people are willing to sign up as subjects.

This caution may have been the prudent thing, but it may have also slowed down investigations that are biologically valid and in fact, facilitate a more just and accessible science. The last 10 years have seen an astonishing rise in the health research of minority populations and disparities due to social class, and the genetic database is only just starting to catch up.

Another barrier is having a misleading taxonomy: the trouble with getting your racial categories right. While there is some relation between your geographical lineage and your collection of genes, the traditional American racial categories like “white” and “Hispanic” are historical artifacts that do not map rigorously to anything in the natural world, even as they shape our society.

This was suspected by famed evolutionary biologist Richard Lewontin in 1972 and confirmed in a 2004 analysis that found that there is more genetic variation within each of those categories than there are differences between any two categories. Of course, people mix across categories, which complicates genetic profiles…

…For all these important reasons for having a diverse genetic database — accuracy in research, finding unique mutations and, yes, a more marketable consumer genetic industry — there is also the sense that race is only one tiny lens among many to view the data. Since the Human Genome project was completed, they found that over 99.5 percent of genes are identical across human kind.

“Yet, almost as soon as researchers announced this result, several research projects began to focus on mapping the less than one percent of human genetic variation onto social categories of race,” Osagie Obasogie, a professor of law at UC Hastings, noted in GeneWatch Magazine in 2009.

Despite the fact that social categories of race do not match genetic categories, and despite the existence of far more similarity than difference among these social categories, a lot of effort has gone into trying to dig up what minuscule matching does exist.

Not only are the old categories of race too rough and misleading for modern biological work, there is a risk for what sociologist Troy Duster calls the “reification of race” — a circular process of using a popular understanding of race (shaped by hundreds of years of custom, biases and so on) to shape the scientific questions and research funding, which then gives an aura of legitimacy to that pile of unexamined biases…

Read the entire article here.

Native American DNA: Tribal Belonging and the False Promise of Genetic Science

University of Minnesota Press
September 2013
256 pages
5 1/2 x 8 1/2
Paper ISBN: 978-0-8166-6586-0
Cloth ISBN: 978-0-8166-6585-3

Kim TallBear, Associate Professor of Anthropology
University of Texas, Austin

Who is a Native American? And who gets to decide? From genealogists searching online for their ancestors to fortune hunters hoping for a slice of casino profits from wealthy tribes, the answers to these seemingly straightforward questions have profound ramifications. The rise of DNA testing has further complicated the issues and raised the stakes.

In Native American DNA, Kim TallBear shows how DNA testing is a powerful—and problematic—scientific process that is useful in determining close biological relatives. But tribal membership is a legal category that has developed in dependence on certain social understandings and historical contexts, a set of concepts that entangles genetic information in a web of family relations, reservation histories, tribal rules, and government regulations. At a larger level, TallBear asserts, the “markers” that are identified and applied to specific groups such as Native American tribes bear the imprints of the cultural, racial, ethnic, national, and even tribal misinterpretations of the humans who study them.

TallBear notes that ideas about racial science, which informed white definitions of tribes in the nineteenth century, are unfortunately being revived in twenty-first-century laboratories. Because today’s science seems so compelling, increasing numbers of Native Americans have begun to believe their own metaphors: “in our blood” is giving way to “in our DNA.” This rhetorical drift, she argues, has significant consequences, and ultimately she shows how Native American claims to land, resources, and sovereignty that have taken generations to ratify may be seriously—and permanently—undermined.

Table of Contents

• Contents
• Acknowledgments
• Introduction: An Indigenous, Feminist Approach to DNA Politics
• 1. Racial Science, Blood, and DNA
• 2. The DNA Dot-com: Selling Ancestry
• 3. Genetic Genealogy Online
• 4. The Genographic Project: The Business of Research and Representation
• Conclusion: Indigenous and Genetic Governance and Knowledge
• Notes
• Index