Utah’s Genome Projects

Local Company Using Genetics to Provide Better Care

Di Lewis

August 1, 2012

Lineagen is on a mission to help people through genetics.

The Salt Lake City-based company is taking advantage of Utah’s vast medical and genetic resources to address complex genetic disorders, such as autism and developmental disorders, multiple sclerosis (MS), and chronic obstructive pulmonary disease (COPD). What really drives its groundbreaking work is the knowledge that better and earlier diagnostics can improve the lives of millions of people, says Alex Lindell, co-founder and senior director of product management.

“We feel that the best thing we can do for children with autism is diagnose them early and diagnose them accurately,” he says. “And the best tool for doing that is genetics.”

A Hidden Treasure
To understand why someone would want to start a genetics company in Utah, it helps to know Utah has a wealth of genetic data people outside the industry don’t know about.

The Utah Population Database (UPDB) is a collaboration between the state of Utah, Huntsman Cancer Foundation and The Church of Jesus Christ of Latter-day Saints. Combining state records, genealogical data and cancer records, the UPDB is one of only a few such resources in the world.

Utah is also the birthplace of the Human Genome Project and is home to most of the Caucasian families whose genomes were mapped.

As a result, the state is a virtual treasure trove of genetic information, which led the state, the University of Utah and the Huntsman Cancer Foundation, with $3.7 million from the Industrial Assistance Fund under then Gov. Michael Leavitt, to start an initiative to “commercialize the unique genetic assets Utah has,” says Michael Paul, president and CEO. In 2002, that initiative became the nonprofit GenData, which later became Lineagen Research Corporation.

Lindell says part of the goal was to bring non-government funding to the technology and genetic assets in the state, which they did. The other part was to grow biotechnology in Utah.

“By doing these types of deals we were bringing the money in, but the intellectual property and the discoveries were really going out,” Lindell says. “So that is how Lineagen as we know it today really got started. We said, ‘OK, we need to bring investment dollars here and do the work ourselves instead of partnering out the work, so we get to maintain the intellectual property and commercialize it here in Utah.’”

To do that, Lineagen, the for-profit company, spun out of Lineagen Research Corporation in 2006.

Early and Accurate
The first task for Lineagen was figuring out what disorders to study. Lindell says they chose to focus on clinical research programs at the U that looked at disorders that were both poorly understood and had a broken diagnostic paradigm.

By using those criteria, the company zeroed in on MS, autism and COPD, with its work on autism being the most advanced.

“We’ve spent decades as a community increasing the awareness of autism,” Lindell says. “What hasn’t changed in that 20 years is that average age of diagnosis. It’s still five years old. So we’ve got all this awareness, but the thing that we can now do best to help children with autism is diagnose them early.”

Paul says early intervention treatments have been shown to be effective in kids as young as 18 months, but making an accurate diagnosis that early based on symptoms alone is very difficult. Although there are more than 700 known disorders of childhood development, they all share a relatively small number of symptoms, Lindell says. Because the disorders have so many symptoms in common, diagnosis based only on symptoms is iffy, particularly with younger children in whom verbal or physical delays may be less noticeable.

“I think a lot of that is the reason why these kids are diagnosed so late. It’s because [doctors] are waiting for the symptoms to become specific enough that they can actually make the diagnosis, but even then the diagnosis is often wrong,” he says.

Unfortunately, most of the early-diagnosis testing is happening at academic centers, whereas community doctors are diagnosing most of the children, Paul says. In 2008, Lineagen developed a commercial screening tool to sell to those doctors. FirstStep is a genetic screening using cells from a cheek swab. The test actually identifies many childhood development disorders, including autism, developmental delay or intellectual disability.

In addition to the FirstStep test, Lineagen also offers pre- and post-test genetic counseling to doctors and families, along with a personal report in lay language so families really understand the diagnosis and what to expect, Paul says. The goal is to “enhance and accelerate” the process so kids with autism or developmental delay can get appropriate care and treatment sooner.

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