Q&A with Verónica Martínez-Cerdeño: Diversifying autism mind banks | Spectrum
Verónica Martínez-Cerdeño
professor, University of California, Davis
Studying post-mortem brain tissue from people with autism is critical to understanding the cellular and molecular changes associated with the disease. But this rare resource lacks diversity: most of the brains donated to science come from people of Western European ancestry.
Cultural and linguistic barriers, as well as the lack of brain banks to store and fix tissue in Hispanic American countries, contribute to the significant underrepresentation of Latin American brains in postmortem brain tissue research, says Verónica Martínez-Cerdeño, professor of pathology at the University of California, Davis. She founded the Hispano-American Brain Bank on Neurodevelopmental Disorders to recruit donors from Spanish-speaking regions of North, Central and South America.
Martínez-Cerdeño spoke to Spectrum about her work to combat differences in brain tissue samples and advance autism research and advocacy in Latin America.
Spectrum: What made you decide to develop the brain bank?
Veronica Martinez Sardinia: When I started as a senior researcher, I wanted to work on animal models of autism. But when I read the research literature on autism, I found that we knew little about the anatomical changes that occur in the autism brain itself. So I started working on post-mortem brains and soon realized that the lack of brains was a huge limiting factor in this type of study. It is for this reason that there are so few laboratories doing this type of research and not many new researchers working in the field.
To help solve this problem, I decided to collect brains from people on the spectrum, particularly a poorly represented population in brain banks: Hispanics. There are hardly any brain banks in Latin America. I brought together researchers and volunteer clinicians to put together a brain bank using brains collected from various locations in different countries including Mexico, Colombia, Puerto Rico, the Dominican Republic, and the United States at the University of California, Davis, and the University of Pittsburgh. The main location is here in California. So far we have collected 150 brains, 12 of them from people with autism and many from people with other neurodevelopmental disorders as well as from neurotypical people.
S: Why is it important to increase the variety of brains available for research?
VM-C: Most post-mortem brain studies do not report race or ethnicity, and rarely include brains from Hispanic people. For a long time, researchers assumed that results from studies in white men apply to all, but this is not the case. Today we know that race, ethnicity and gender play important roles in the development of diseases and the way people respond to environmental factors and specific treatments. To properly understand neurodevelopmental disorders, it is really important to conduct studies on a diverse range of people.
S: What are some of the challenges in increasing brain bank diversity?
VM-C: What I found with brain banking is that Hispanics are less likely to donate because of their cultural backgrounds. Most of the brain banks are located in the United States, Europe, Australia, and New Zealand. However, there are no brain banks in Africa or Latin America. People in these areas have never heard of brain donation, so it is harder for them to donate. That’s why we also do outreach to educate people about the importance of donating your brain to any brain bank – not just ours. A brain donation is important not only from people with neurological diseases, but also from neurotypical people. One of the problems I find is that sometimes when you’re investigating a condition like autism you can find multiple autism brains, but you can’t find well-matched – neurotypical – control brains.
S: How do you work with potential donors?
VM-C: When a family contacts us about someone who is or is about to die, a brain bank representative speaks to them about what is going to happen. One of our advantages is that we are Hispanic ourselves, so we speak to them in their language and culture. We explain to them what kind of research we’re doing with the brain and we get their signed consent, a process that depends on country regulations. We help determine where to take the brain, for example in a hospital or a funeral home. The brain extraction is done aesthetically. In the Hispanic world, it is very important that the body be present at the funeral. We explain to families that the brain is carefully removed so that no physical signs are left – to know that they are more comfortable donating.
An important aspect of the process is the standardization of the diagnosis. The way autism is diagnosed varies from country to country. We collect the donor’s clinical history from the family and administer the ADI-R [Autism Diagnostic Interview-Revised] to the parent or guardian or a modified version of the CRIDI [Criteria Diagnostic Interview] in Spanish designed by one of our researchers in Mexico. It is already widespread across Latin America.
S: What happens after you receive a donation?
VM-C: When we collect the brain, we divide it in half. One hemisphere is frozen and used for molecular and genetic studies, the other half is chemically fixed for anatomical studies. The tissue is kept in a freezer or refrigerator until it is used for research.
S: What are the biggest challenges you faced?
VM-C: Right now it’s COVID. Donation is not currently allowed in most Hispanic countries so we’ve slowed down since the pandemic started. Another challenge is understanding the bureaucracy in each country. Every country is different and that is sometimes confusing and time consuming.
S: You said the brain bank isn’t just a research tool. Could you elaborate on that?
VM-C: We do a lot of community work teaching many children and the population about neuroscience and science in general. We are also building research and education collaborations between countries. We’re not just a brain-collecting machine. This is a cultural and research movement promoting research on autism and neurodevelopmental disorders in Latin America.
Quote this article: https://doi.org/10.53053/UYJV1086
