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Illumina, Genetic Alliance Launch iHope Genetic Health for Whole Genome Sequencing

By Allison Proffitt 

November 22, 2021 | Illumina and Genetic Alliance announced this week the creation of the iHope Genetic Health program aimed at providing whole-genome sequencing access (WGS) to tens of thousands of patients across the globe impacted by genetic disease. At least half of iHope Genetic Health's efforts will be focused on areas of the world in need outside the US, with more than one-third of Illumina's support being dedicated to patients in Africa. 

iHope Genetic Health will build upon the success of Illumina's existing iHope efforts. The historical iHope network was composed of like-minded laboratories providing philanthropic sequencing using their own resources and contributing those data to ClinVar. The iHope Genetic Health program extends the reach of the program to include clinical laboratories and care centers throughout the world who may not have been able to fund their own sequencing to test patients impacted by rare disease and other genetic health conditions.

“iHope Genetic Health has been specifically established to enable laboratories to provide clinical whole genome sequencing (cWGS) to patients with indications of a rare disease at no cost to the patients,” explained Ryan Taft, Illumina's iHope lead and Vice President, scientific research. “To scale iHope’s reach we required a new vehicle that could objectively assess and then enable laboratories and their partner clinics directly.  

The program launched with a $120 million in-kind donation commitment from Illumina over the course of five years.—an investment Illumina hopes will impact tens of thousands of patients across the globe. “Illumina, Inc is contributing sequencers, reagents, access to computers and software in a mix that will be defined by the needs of the program and through the granting process,” Taft said. Donations from philanthropists and other technology partners are also welcome. 

iHope Genetic Health will be driven, governed, and administered by Genetic Alliance, a global nonprofit focused on advancing genetics to benefit human health, to create networks of clinics, and laboratories equipped with the necessary genome technology to provide precision genomic diagnoses to patients suffering from rare genetic disease. As part of this program, Genetic Alliance will also partner with pharmaceutical and technology companies and care providers to support patient access to data, therapeutic interventions, and ongoing supportive care. 

"Since our inception in 1986, Genetic Alliance's mission has been to realize a world in which those affected by genetic disease are diagnosed and offered interventions to alleviate their suffering," said Genetic Alliance CEO, Sharon Terry in a statement announcing the program. "As the mother of two children, diagnosed with a genetic condition, I can't rest until we build equitable systems to meet the needs of all who experience the diagnostic odyssey. In iHope Genetic Health we recognize the place of individuals, families, and communities to prioritize and solve the problems they face, consistent with their own values and culture."

Genetic Alliance will enable labs and partner clinics and clinicians to provide clinical whole genome testing—from both existing members of the iHope network and new laboratories that have not previously had the means to help resource-limited patients. 

“The program will support laboratories and partner clinics. Those may be co-located or at a distance. The goal is to enable access in resource-limited communities, so we expect a mixture of both in-hospital laboratories where the clinicians are co-located; and reference laboratories who partner with distant clinics that are closer to the population being supported,” Taft explained. He compared the model to how Illumina’s Clinical Laboratory currently works with sites in Mexico, Peru and the Democratic Republic of the Congo.

The assessment criteria for labs are still under development and will be launched next year, Taft said. iHope Genetic Health will begin reviewing applications for clinical whole genome sequencing programs in February 2022.

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