New campaign seeks to address high rates of genetic disorders for South Asians

SOUTH Asians make up over 25% of the world’s population, however only 1% of whole genome data comes from the region. Ethnically-specific genomic data allows researchers to develop carrier tests and improve diagnosis and treatment for high-risk genetic conditions. Currently, most genomic data is from Western Europeans, while rates of genetic disease in South Asia are double the global average.

GenomeAsia 100K is sequencing the genomes of individuals throughout South Asia, addressing the critical lack of data and enabling researchers to undertake their life-saving and life-changing work. The Map the Gap campaign seeks to increase awareness and raise $150,000. Data collected will be used to develop carrier tests for populations at high risk for genetic birth defects, reducing the incidence of such conditions over time. Data will also support research for cures to single-gene disorders and even complex diseases like diabetes and cancer.

One area where better genomic data has already made a significant impact is in diabetes. People of South Asian descent have a risk of developing diabetes that is six times higher than Europeans. Natasha, a South Asian living in Canada, knew that her mother and grandmother were diabetic. Understanding the hereditary component of diabetes, Natasha’s doctors treated her as a pre-diabetic when pregnant with her first child. She took medication, controlled her diet, and had additional blood sugar testing throughout her pregnancy. These steps lowered her risk and the risk of her child. She said: “By understanding of the genetic component of diabetes, the doctors gave me treatment that potentially saved my life and my son’s life. I am backing this campaign so that carrier tests can be developed for other inherited diseases, and more lives saved.”

The campaign kicks off at the London Festival of Genomics on January 30-13 with a talk from Lakshmi Maithel, Map the Gap Program Director. “Growing up, we all knew of someone who had a genetic disease,” explains Lakshmi. “My background in biotechnology made me realize that we need more genetic data in order to diagnose and treat people from South Asian populations. I am very proud that GenomeAsia 100K has already mapped the DNA of 600 South Asians. The Map the Gap campaign seeks to raise enough money to sequence the next 100 individuals.”

 

Backgrounder

GenomeAsia 100k has launched a campaign on FundRazr to address the lack of genomic data from South Asians, enabling the development of carrier tests, and improved diagnosis and treatment for rare diseases, cancers, and diabetes.

Key Facts:

  • The  incidence of genetic disease in South Asia is double the global average.
  • Only 1% of all genomic data comes from South Asia, even though South Asians make up over 25% of the world’s population.
  • In India, 1 in 10 pediatric hospital visits are for genetic diseases.
  • 95% of rare diseases do not have a cure
  • 80% of rare diseases come from a single gene
  • Nearly all diseases have a genetic component, with the right data the incidence of genetic disease can be reduced, through early detection and treatment.

What is a genome? A genome is an organism’s complete set of DNA, including all of its genes. Each genome contains all of the information needed to build and maintain that organism. In humans, a copy of the entire genome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus. (US National Library of Medicine). The genome is your recipe for life, it is what makes you, you, and what you have inherited from your parents.

So what? Nearly all diseases have a genetic component — from rare diseases to more common ones like cancer, diabetes and cardiovascular disease. Sequencing full genomes allows research to take place to develop carrier tests, diagnostic tests and treatments. Most genomes come from western Europe, which means there is less data known about other ethnicities. Many people of South Asian descent may not be aware of the risks contained in the genes they are carrying.

 

ABOUT MAP THE GAP and GENOMEASIA100K

The Map the Gap campaign is part of a larger initiative, The GenomeAsia 100K project, to sequence the DNA of 100,000 people from across 28 countries in Asia.This is a non-profit organization and data generated by GenomeAsia 100K will be made publicly available to scientists. You can also find out more at www.genomeasia100k.com.

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