Why did you launch this Initiative?
Genomic research has the potential to provide some of the most personalized and effective medical treatments for many medical disorders, including heart disease, stroke, asthma, diabetes, Alzheimer’s Disease, and schizophrenia. It is imperative that we study the genomic makeup of all ethnicities because they are all unique and understanding each will bring us closer to personalized medicine for all people.
There needs to be system level change across all levels of society to reduce research health disparities. We are addressing the area of brain research head on. Together with the African American community, our new initiative will work to close the gap in health disparities and accelerate research efforts that will lead to new treatments for brain disorders.
How did this disparity in genomic research happen in the first place?
The human genome is incredibly complex. Scientists took on the less complicated genome first– the Caucasian European genome – because it has less generations of genetic change than other genomes. Getting this done was a huge step forward for science and for all people’s health. But we must not stop there. It is critical to map ALL genomes, and study ALL brain data, in order to end health disparities.
Why isn’t this work already being done?
The Lieber Institute has invested $20 million dollars to date in African American brain research. In addition, the NIH and others have been working to reduce the disparities in genomic research, as illustrated by the ‘All of Us’ initiative and by establishing a requirement to include more minorities in research to help better understand how genetic differences might be causing differences in health outcomes.
What is the goal of this Initiative?
We want to ensure that personalized medicine is for all people, not just individuals of European ancestry. The goal of this collaboration is to make publicly available the largest data set in the world on human postmortem brains of individuals of recent African ancestry. By sharing this data with researchers globally we will accelerate the development of new cures to reduce disparities in health outcomes.
To achieve this goal, we need to understand how differences in genomes play out in the brain. For example, we know that for individuals of European ancestry, having the principal gene of risk for late onset Alzheimer’s results in 4x the likelihood of developing the disease. Yet in individuals of recent African ancestry, individuals with same principal gene show much less risk, and yet overall, African Americans are twice as likely to get Alzheimer’s.
We hope this effort will ensure that more genomic and clinical research studies include minority populations and researchers worldwide will be able to advance new treatments and prevention strategies for individuals of African ancestry.
What about other ethnic minority groups like Asian Americans or Latinos?
The Lieber Institute is also working hard to diversify its brain repository through inclusion of other ethnic groups such as Asians, Latinos and indigenous populations. We can do this because we have partnered with communities and medical examiner’s offices, and have been receiving brain donations from families across the country.
Why did the Lieber Institute and Clergy Leaders partner?
Working with communities at the start of a research project is without a doubt extremely valuable to the success of the research. Scientists across the world are working with patients and community leaders to help guide their research strategies, increase funding for continued work together and help communities understand the process. In this case, it was important to have the confidence and trust of the African American community.
The clergy leadership team works with the Lieber Institute to engage the public sector to support and invest in this work. We are partnering to speak to Congress, the NIH and other organizations to support our work. Our hope is that there is a groundswell of interest and that we can expand this work beyond what can be done here.
Why is it important to specifically study African Americans?
Genomic research has the potential to provide some of the most personalized and effective medical treatments of our time, however, minority groups are poorly represented in these large-scale genomic studies.
Today, 81% of large-scale genomic datasets are of European decent even though this group makes up less than 16% of the world population.
The research community uses the human reference genome (HRG), which is the genome of a European Caucasian male. We know that 10 percent of the African American genome is missing from the HRG. When you use the reference genome to predict risk for common disease, you can predict 10-35 percent in Caucasians, but only 5% in African Americans. There is a huge gap in the information we need to personalize medicine.
While it is critical to have more robust clinical genetic data on ethnic minority populations, it is also important that we create tissue specific large data sets (e.g. brain).