Problematic Organizations: Autism Genetic Resource Exchange

The Autism Resource Exchange (ARGE) is a open gene bank with a large collection of DNA samples from families with more than one autistic child.  There is data from over 2000 families.

Standardization, collaboration and data sharing are the three key guiding principles of AGRE. It is focused on the rapid accumulation of high quality data from a large number of families. This is critical for molecular genetic research of complex diseases. They include autism in this but we know autism is not a disease. All the data and biomaterial  are made available to qualified researchers around the world when the data is processed. There are 335 active researches from 21 countries who have used AGRE to publish 169 scientific papers, “making it the most widely accessed resource for genetic studies of any mental disorder.” Autism is not a mental disorder.

The sample is not population based. There is a sample biased towards the recruitment of families with more than one autistic person in the family. According to AGRE, these families have an increased genetic load. Participants are recruited based on autism diagnosis and all individuals are include if they meet diagnostic criteria and have an English Speaking parent.

The data used to be collected in the families’ home. They expanded into a role of a Data Coordinating Center (DCC). They now receive data from outside researchers. They are expanding their resources collaborating with researcher institutions who are working with families with autistic children.

They plan to accelerate the pace of autism research by enlarging their resource and continuing to make the data available world wide.

This  is backed by Autism Speaks since the merger. It provides DNA specimens to geneticists for researching a cure, early detection, genes that may be linked, and “biological based approaches to diagnosis and treatment of individals with ASD.”

The AGRE was started in 1997 by Cure Autism Now. Cure Autism Now committed over $25 Million to funding research, including this program. In 2007, CAN merged with Autism Speaks. It is the largest private, open access repository of clinical and genetic information for autism research. AGRE enables an open science to accelerate search for the cure. An Autism Speaks says they are not searching for a cure!

On December 12, 2011, AGRE joins the National Institute of Health National Database for Autism Research (NDAR). “The collaboration between AGRE and NDAR exemplifies the efforts of government and stakeholders working together for a common cause,” said Thomas R Insel, MD director of the National Institute for Mental Health (NIMH). “NDAR continues to be a leader in the effort to standardized and share ASD data with the research community, and services as a model for other research communities.”


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