Nav: Home

Diversity in medical research is a long way off, study shows

December 15, 2015

Despite Congressional mandates aimed at diversifying clinical research, little has changed in the last 30 years in both the numbers of studies that include minorities and the diversity of scientists being funded, according to a new analysis by researchers at UC San Francisco.

That lack of diversity could have a serious impact on our ability to care for the nearly 40 percent of the current U.S. population whose heritage includes non-European races, the authors said, and will increase in urgency as the proportion of minority residents exceeds 50 percent in 2044.

The commentary, which was published Dec. 15, 2015, in the Policy Forum of online scientific journal PLoS Medicine, compiled 30 years of raw data on funding for research by non-White scientists, as well as two decades of analyses from the National Institutes of Health (NIH) and others regarding the percentage of clinical studies that include racial and ethnic minorities.

They found that since the 1993 NIH Revitalization Act, which required all federally funded clinical research to prioritize the inclusion of women and minorities, less than 2 percent of the 10,000-plus cancer studies have included enough minorities to be relevant, and less than 5 percent of respiratory studies have. A separate Freedom of Information Act request also showed that the people best able to reach minority study participants -- scientists from those communities -- are consistently less likely to receive NIH funding, in terms of the percentage of their grants that are funded. Both the challenges and solutions are multifactorial, they said, but not insurmountable.

"This country is plagued by racial and ethnic disparities in some of the deadliest and most debilitating diseases, including cancer, cardiovascular disease, diabetes and asthma," said co-senior author Esteban González Burchard, MD, MPH, a pulmonologist and professor of bioengineering and therapeutic sciences in the UCSF schools of Pharmacy and Medicine. "The only way we will make progress in decreasing that burden of disease is by understanding why it occurs. And we can't understand that without including diverse communities in our research."

Those disparities also have economic consequences: The paper cited research showing that from 2003 to 2006, alone, racial and ethnic health disparities increased U.S. medical costs by more than $1.2 trillion.

"Increasing diversity is also a worthwhile effort scientifically," said first author Sam Oh, PhD, MPH, an epidemiologist and researcher in the UCSF Center for Genes, Environment and Health. "We can't divert our resources knowing that an intervention is only going to work on a small portion of the population. By understanding that population, we can target our resources effectively for everyone. But we'll only learn that by having study populations that represent everyone."

The paper cites a number of medications that are known to affect people differently based on their genetic backgrounds, including the blood thinner clopidogrel, which is prescribed to reduce stroke risk after angioplasty, but is ineffective in the 50 percent of Asians who lack the enzyme to activate it. Other examples include the epilepsy drug carbamazepime, which is deadly to Asians who have the gene HLA-B*1502, and the asthma drug albuterol, which has a lower response rate among African-Americans.

Burchard, who leads the nation's largest gene-environment study on asthma in minority children in the United States, said there are multiple challenges to diversifying clinical studies, but those can be overcome through a commitment by funders and researchers alike. The paper noted that even though the 1993 mandate stipulated that cost could not be used to justify the failure to enroll diverse populations, which can cost more to reach effectively, no discussion of new mandates for research can take place without addressing "the crisis of declining inflation-adjusted NIH budgets." This competitive funding environment, which the authors emphasized is beyond the control of the NIH, encourages researchers to reduce their grant proposals as much as possible in the hopes of being funded at all, which inadvertently encourages them to choose populations that are less expensive to reach.

"The NIH alone will not be able to correct the disparities or inequities of the healthcare system," the authors wrote, "but it can send a powerful message that may promote changes in our health care and health science systems."

The paper cited multiple known barriers for study participation by U.S. minorities, including limited access to specialty centers that refer patients to clinical studies, fear of exploitation in medical research, financial constraints, cultural and language barriers, and competing demands on time, among others. They offered a variety of approaches to address these, ranging from partnerships with community organizations to flexible study hours, targeted ads, payment, or food or travel support for participants.

A significant impediment, they said, is the lack of diversity among the research and clinical professions. Not only are minority physicians and scientists more likely to conduct research in minority populations, but they also may be able to gain the trust of those communities more easily in recruitment.

Yet these professionals remain underrepresented in medical and scientific communities. For example, African Americans and Hispanics represent 4.3 percent and 7.2 percent, respectively, of biomedical doctoral degrees in 2013, and less than 2 percent and 3.4 percent, respectively, of NIH-funded principal investigators. The U.S. Census bureau estimated that African-Americans made up 13.2 percent of the U.S. population in 2014, and Hispanics, 17.4 percent.

Non-White scientists also are less likely to be awarded funding for their grants. In the new analysis, the authors found that the award rate for the gold-standard R01 or equivalent grants has remained consistently lower among minority applicants than Whites for three decades. In 1985, 42.1 percent of non-White researchers' grant applications were funded, versus 48.6 percent for Whites. By 2013, both had declined to 19.3 percent versus 23.3 percent -- a smaller spread, but greater percentage difference.

The authors applauded the NIH's current efforts to address these issues, including actively soliciting feedback to diversify President Obama's Precision Medicine Initiative, for which Burchard is a member of the NIH-appointed working group. They also recommended other possible approaches, including increasing NIH funding overall; diversifying the committees that review grant applications, which remain 90 percent White; formally including minority recruitment among the criteria for determining scientific merit of studies; and empowering the NIH to set and enforce similar requirements for minority recruitment as it does for gender.

"Diversity in science is science done well," said Oh. "You need diversity in the research, diversity in who is being studied and diversity in the people doing the science. Otherwise you become an echo chamber -- everyone looks and sounds just like us."
-end-
UCSF Professor Neil R. Powe, MD, MPH, MBA, is co-senior author on the paper. Additional authors from UCSF include Joshua Galanter, MD, MAS; Neeta Thakur, MD, MPH; Maria Pino-Yanes, PhD; Nicolas E. Barcelo, Marquitta J. White, PhD, MS; Danielle M. de Bruin; Ruth M. Greenblatt, MD; Kirsten Bibbins-Domingo, MD, PhD, MAS; and Alan H.B. Wu, PhD. Additional co-authors include Luisa N. Borrell, PhD, DDS, MPH., in the School of Health Sciences at City University of New York; and Chris Gunter, PhD, in the Emory University School of Medicine in Atlanta, GA.

Researchers on the paper were supported by the National Institutes of Health, the RWJF Amos Medical Faculty Development Award, the Sandler Foundation and the American Asthma Foundation. Additional funding sources and author details are available in the paper.

About UCSF: UC San Francisco (UCSF) is a leading university dedicated to promoting health worldwide through advanced biomedical research, graduate-level education in the life sciences and health professions, and excellence in patient care. It includes top-ranked graduate schools of dentistry, medicine, nursing and pharmacy, a graduate division with nationally renowned programs in basic, biomedical, translational and population sciences. It also includes a preeminent biomedical research enterprise and UCSF Health, which includes two top-ranked hospitals, UCSF Medical Center and UCSF Benioff Children's Hospital San Francisco, as well as other partner and affiliated hospitals and healthcare providers throughout the Bay Area. Please visit http://www.ucsf.edu.

University of California - San Francisco

Related Diversity Articles:

Revealing Aspergillus diversity for industrial applications
In a Feb. 14, 2017 study published in Genome Biology, an international team report sequencing the genomes of 10 novel Aspergillus species, which were compared with the eight other sequenced Aspergillus species.
Important to maintain a diversity of habitats in the sea
Researchers from University of Gothenburg and the Swedish University of Agricultural Sciences (SLU) show that both species diversity and habitat diversity are critical to understand the functioning of ecosystems.
Discovering what shapes language diversity
A research team led by Colorado State University is the first to use a form of simulation modeling to study the processes that shape language diversity patterns.
Making the switch to polarization diversity
New silicon photonic chip that offers significant improvement to the optical switches used by fiber optic networks to be presented at OFC 2017 in Los Angeles.
Deciphering the emergence of neuronal diversity
Neuroscientists at UNIGE have analysed the diversity of inhibitory interneurons during the developmental period surrounding birth.
Epigenetic diversity in childhood cancer
Tumors of the elderly carry many DNA mutations that can influence disease course.
Diversity without limits
Now, researchers at Temple and Oakland universities have completed a new tree of prokaryotic life calibrated to time, assembled from 11,784 species of bacteria.
Threatened by diversity
Psychologist Brenda Major identifies what may be a key factor in many white Americans' support for Donald Trump.
Diversity as natural pesticide
Monoculture crops provide the nutrient levels insect pests crave, explains a study led by the University of California, Davis, in the journal Nature. Returning plant diversity to farmland could be a key step toward sustainable pest control.
A missing influence in keeping diversity within the academy?
A new study of science Ph.D.s who embarked on careers between 2004 and 2014 showed that while nearly two-thirds chose employment outside academic science, their reasons for doing so had little to do with the advice they received from faculty advisors, other scientific mentors, family, or even graduate school peers.

Related Diversity Reading:

Inclusion: Diversity, The New Workplace & The Will To Change
by Jennifer Brown (Author)

Embrace Diversity and Thrive As An Organization In the rapidly changing business landscape, harnessing the power of diversity and inclusion is essential for the very viability and sustainability of every organization. Talent who feel fully welcomed, valued, respected, and heard by their colleagues and their organizations will fuel this growth. We will only succeed in this transformation if those in leadership pivot from command and control management styles to reinvent how we look at people, every organization’s greatest asset. It’s also critical that we build systems that embrace... View Details


Diversity: The Invention of a Concept
by Peter Wood (Author)

Peter Wood traces the birth and evolution of diversity, illuminating how it came to sprawl across politics, law, education, business, entertainment, personal aspiration, religion and the arts as an encompassing claim about human identity. View Details


Readings for Diversity and Social Justice
by Maurianne Adams (Editor), Warren J. Blumenfeld (Editor), Heather W. Hackman (Editor), Madeline L. Peters (Editor), Ximena Zuniga (Editor)

For more than a decade, Readings for Diversity and Social Justice has been the trusted, leading anthology to cover the full range of social oppressions from a social justice standpoint. With full sections dedicated to racism, sexism, classism, heterosexism, and ableism, as well as transgender oppression, religious oppression, and adult and ageism, this bestselling text goes far beyond the range of traditional readers. New essay selections in each section of this third edition have been carefully chosen to keep topic coverage timely and readings accessible and engaging for... View Details


Diversity Consciousness: Opening Our Minds to People, Cultures, and Opportunities (4th Edition) (Student Success 2015 Copyright Series)
by Richard D. Bucher (Author)

For courses in Success/Orientation, Diversity (ie. Managing Diversity), Race and Ethnic Relations, Cultural Diversity in the Workplace, Multiculturalism and Inclusion (ie. leadership, group dynamics, teaching, social media/networking), Education, Nursing, Human Relations, Communications, Hospitality, Social Work/Family Therapy/Human Services, EMS and Fire Science, Counseling, Criminal Justice, Social Justice/Equity; also for teacher-training education... View Details


The Diversity and Inclusion Handbook
by Sondra Thiederman (Author)

Why should diversity and inclusion matter to you and your organization? The answer lies in that one thing we all strive for: SUCCESS. When team members of all backgrounds are included, valued, and respected for their uniqueness and what they have to contribute, they truly are more creative, more committed, more collaborative, and more motivated to participate to the fullness of their potential. They move from a collection of untapped individuals to a productive US focused on common goals and collective achievement. Helping you reach that level of success is what this book is all about! This... View Details


Diversity and Society: Race, Ethnicity, and Gender
by Joseph F. Healey (Author), Andi Stepnick (Author)

Adapted from Joseph F. Healey and Eileen O’Brien’s bestselling Race, Ethnicity, Gender, and Class, this brief and accessible text presents a unified sociological frame of reference to help students analyze minority-dominant relations in the U.S. Diversity and Society: Race, Ethnicity, and Gender, Fifth Edition explores the history and contemporary status of racial and ethnic groups in the U.S., including differences between the experiences of minority men and women. In addition, the book includes comparative, cross-national coverage of group relations. View Details


The Family: Diversity, Inequality, and Social Change
by Philip N. Cohen (Author)

Learn the facts and debunk the fictions about contemporary families.

Looking at modern families through the context of diversity, inequality, and social change, FamilyInequality.com blogger and demographer Philip N. Cohen brings a fresh approach to the sociological study of family life. The text features a wealth of original, interactive graphics of contemporary family trends and encourages students to be savvy consumers of media. Integrated workshops based on activities from Cohen’s undergraduate course give students the opportunity to apply what they learn in the... View Details


Cultural Diversity in Health and Illness (9th Edition)
by Rachel E. Spector (Author)

For courses in Community/Public Health Nursing, Transcultural Nursing, and CEUs.

 

Promotes an awareness of the dimensions and complexities involved in caring for people from diverse cultural backgrounds


The ninth edition of Cultural Diversity in Health and Wellness examines the differences existing within North America by probing the health care system, consumers, and examples of traditional health beliefs and practices among selected populations. An... View Details


Chocolate Milk, Por Favor: Celebrating Diversity with Empathy
by Maria Dismondy (Author), Nancy Day (Editor), Donna Farrell (Editor), Elizabeth Supan (Editor)

It's Gabe's first day of school in America, and he doesn't speak English. This story shows how a simple act of kindness is worth more than a thousand words. Kindness really is a universal language. View Details


Diversity Amid Globalization: World Regions, Environment, Development (6th Edition)
by Lester Rowntree (Author), Martin Lewis (Author), Marie Price (Author), William Wyckoff (Author)

For Introductory World Regional Geography/Regional Geography Courses.

Students learn to think outside of the map


Diversity Amid Globalization takes students on a journey into the connections and diversity between people and places–the contrasting regions of the world–within thematically organized regional chapters. With an arresting visual layout and new and updated content and maps throughout, the text maintains and strengthens its hallmark thematic... View Details

Best Science Podcasts 2018

We have hand picked the best science podcasts for 2018. Sit back and enjoy new science podcasts updated daily from your favorite science news services and scientists.
Now Playing: TED Radio Hour

The Big Five
What are the five biggest global challenges we face right now — and what can we do about them? This hour, TED speakers explore some radical solutions to these enduring problems. Guests include geoengineer Tim Kruger, president of the International Rescue Committee David Miliband, political scientist Ian Bremmer, global data analyst Sarah Menker, and historian Rutger Bregman.
Now Playing: Science for the People

#456 Inside a Conservation NGO
This week we take a close look at conservation NGOS: what they do, how they work, and - most importantly - why we need them. We'll be speaking with Shyla Raghav, the Climate Change Lead at Conservation International, about using strategy and policy to tackle climate change. Then we'll speak with Rebecca Shaw, Lead Scientist at the World Wildlife Fund, about how and why you should get involved with conservation initiatives.