Dr. Goldie Byrd, lead investigator of the African Americans Alzheimer’s Disease Study and Nathan F. Simms Endowed professor of biology at North Carolina A&T, said “most of the genomic studies are still done on Europeans, on Whites.”
The planned opening of a brand-new, 3,100-square-foot building at North Carolina A&T State University later this year will mark another milestone in A&T’s role as lead research site for the first and largest study of Alzheimer’s disease among Blacks.
This state-of-the-art facility will house Dr. Goldie Byrd—lead investigator of the African Americans Alzheimer’s Disease Study and Nathan F. Simms Endowed professor of biology at A&T—and her research team and other support staff. This study aims to discover why Alzheimer’s strikes Blacks more than any other racial group in the United States. Researchers from A&T and three other colleges—the University of Miami, Vanderbilt University and Columbia University—aspire to enroll 7,000 volunteers in their groundbreaking effort. So far, 1,620 have signed up, a far cry from the few dozen Black volunteers who signed up for the study when it was housed at Duke University until moved to historically Black A&T in 2003.
Duke University has seen its share of race-based turmoil in the years following the decision by university leaders to end Duke’s all-White admissions policy in 1961. In 1968, Black students, concerned about their on-campus civil rights and non-academic worker wages, staged a takeover of Duke offices that resulted in a pay raise for Black cafeteria, grounds and other service workers, but a year-long academic probation for the protesters. Last year, Duke made headlines when Black students protested an unpublished study by Duke researchers that said Blacks were able to match the GPA of Whites over time by switching to less rigorous majors.
Such instances remain on the minds of Black North Carolinians of a certain sensibility and age that the Alzheimer’s study targets, explains Byrd.
“People remember when they couldn’t come to Duke and get good medical care,” Byrd told journalists at a health disparities conference in Washington, D.C., earlier this year. “Duke had 7,000 blood samples by 2003, but only 43 of them were from Black people.”
Byrd arrived at A&T in 2003 as chair of the Department of Biology. That same year, she completed a sabbatical at the Duke Center for Human Genetics where she and her collaborators helped initiate the Alzheimer’s study. Byrd, who is dean of the College of Arts and Sciences, hopes to identify specific genes in African-American patients with Alzheimer’s to understand why the population is more susceptible to the disease. Alzheimer’s occurs twice as often in Blacks as in Whites. The disease, which is the most common form of dementia, occurs 1.5 times more frequently in Blacks than in Latinos.
After Byrd and her team were awarded with a $1 million grant for outreach activities earlier this year, A&T ramped up outreach efforts in the Black community at locales including barbershops, churches, senior centers and so forth. That has been one way that the project, which has won citations from the Alzheimer’s Association and National Black College Hall of Fame, engendered trust. Having a lead researcher who is Black was also viewed as a real plus, Byrd says.
“In spite of the [National Institute of Health’s] Revitalization Act back in 1993 saying that you must include women and minorities in federally funded studies, most of the genomic studies are still done on Europeans, on Whites,” she explains.
“We have an opportunity here to really address the genomics in African-Americans with Alzheimer’s disease,” adds Byrd, while preparing for the opening day of “Why We Can’t Wait: Conference to Eliminate Health Disparities in Genomic Medicine,” held in San Francisco in May—she was a member of the planning committee for that conference. “We still face the fact that the knowledge gained from [most] studies is too generalized to apply to all populations. We know that, and that is critical.”
While A&T is the lead research site, Columbia and Vanderbilt universities and the University of Miami have tapped their own investigators and contributed to that pool of 1,620 study participants, 660 of which are at A&T. Participants are a mix of people with Alzheimer’s and, for health comparisons, ones without the illness.
Dr. Jennifer Manly, a neuropsychologist with Columbia University’s Taub Institute for Research on Alzheimer’s Disease and the Aging Brain, oversees its arm of the study. She, too, is aware of lingering skepticism some Blacks harbor about participating in health-related studies. That trepidation dates back, for example, to the infamous Tuskegee syphilis experiment. For four decades, beginning in 1932, federal researchers explored the effects of syphilis on Black men in rural Tennessee, without treating them for the disease.
Manly says she strives to have a particular stance with the people who are her research subjects.
“How do we think about them and their experiences and try to make it as culturally relevant as possible?” she asks, rhetorically. “The other fact of the matter is that, although I’m African-American and live in New York, I’m not necessarily a part of their community. I’m not their age, not their cohort, so I have a lot to learn from them. And that’s the way I approach my talks in the community.”
“We need more African-American lead researchers,” Manly continues. “It’s a struggle every day for us to make sure that people understand why we are doing this research and why we need to do it among African-Americans, and when we’re doing research among African-Americans, the need to do it right.”
Besides snagging more Alzheimer’s study participants, the shift to A&T has brought the campus more attention from federal research funders and pharmaceutical giants such as Merck. Merck is underwriting some of the outreach programs, including those that will be run out of the upcoming building that will house Byrd and her team. Laboratories, a library and community rooms are in that building’s blueprint.
Research into Alzheimer’s will need to consider the bare clinical facts of the disease with its typical progression from mild forgetfulness and missed daily tasks to major mental and physical debilitation and incapacitation. But there also are the nuances, researchers say. The nuances are what they are attempting to zero in on.
“The genetic cause is going to explain a small amount of the risks [for Alzheimer’s],” says Manly. “But it is never going to explain everything. African-Americans have more cardiovascular disease, strokes, more hypertension, diabetes, which, in and of themselves, can cause cognitive dysfunction.” (Dementia, one form of cognition dysfunction, is a symptom of Alzheimer’s.)
Those extenuating health factors matter,” Manly adds. “So do life experiences and circumstances. Poverty and racism, for instance, can induce stress. Stress affects wellness. How might those overlay Alzheimer’s disease among Black people?”
Many average citizens are more aware of what’s at stake regarding the Alzheimer’s project, says Takiyah Starks, the study’s clinical research coordinator. Starks’ 88-year-old grandmother, cared for by her daughter in Chicago, was diagnosed with Alzheimer’s when she was in her 50s.
“They have embraced the project,” says Starks, referring to Blacks who support the study. “Many of them try to take it on as their own. They try to bring more people in.”
Currently there is no end date for the research. For now, it primarily targets those aged 60 and older who do and do not have Alzheimer’s. They are subjected to two to three hours of testing to measure cognitive skills and other non-invasive probing.
The research also aims to enlist younger relatives of people with Alzheimer’s who are experiencing mild cognitive decline. The study also aims to identify various biomarkers of the disease by tapping spinal fluid, for example.
“When genetic causes of the disease start to yield potential remedies for the disease, African-Americans don’t want to be behind in that curve because the burden of our community is significant,” says Manly. “We want to be out on the front end of this.”
This study is great news. When my father (Big Ray) developed Alzheimer’s disease in 1997 I had little to no understanding of what it was or how common it is. In 2007 I started working on a portrait project related to family caregivers of people with Alzheimer’s-dementia disease. I hope to get to North Carolina before the end of the year.
Raymond W Holman Jr
August 21, 2013 at 3:09 pm
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