Blacks have been largely excluded from autism studies. Here’s what’s being done to change that

autism african american

[Editor’s note: Daniel Geschwind’s team at the University of California, Los Angeles (UCLA), along with researchers at three other universities, set out in 2013 to increase the number of African-Americans in autism studies.]

How does diversity benefit autism genetics?

Geneticists benefit from having a relatively homogeneous population for studies that identify genes. This ensures that genetic variation isn’t different between cases…But rare variants may crop up only in certain populations, so a study that mostly enrolls people of European descent might miss those variants. Alternatively, variants that are rare and seem harmful in people from one genetic background may not be so rare in another population. Increasing the diversity of genetic databases could show that some of those variants aren’t harmful after all.

Have you learned anything about autism diagnoses in [the African American] population?

This isn’t an epidemiologically representative sample, but we can begin to collect preliminary data to understand how and when children in this population are diagnosed. Our work sets up the key questions that researchers can follow up on in a more representative sample.

So far, we are finding that there are still very significant delays in diagnosis.

How has the community responded to the project?

When we launched the project, there was an outpouring of positive feedback from the African-American community. We were involving families in research that had so far felt ignored.

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion, and analysis. Read full, original post: Questions for Daniel Geschwind: Making autism studies diverse

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