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Crowdfunding Genetic Therapy: A Healthcare Revolution

There’s a healthcare revolution underway, and I am not talking about Obamacare. While the “individual mandate” debate and the Supreme Court ruling have stymied CNN reporters and temporarily turned the Twittersphere into a salon for legal debate, you might have missed Dr. Jimmy Lin, the 2012 TED fellow pioneering crowdsourced funding for cutting-edge research on treatments for rare genetic diseases. Last week I had the chance to hear Dr. Lin, a computational biologist, physician, current seminary student and founder of the Rare Genomics Institute, discuss “God, Genes, and Human Identity” at the National Press Club, in a conversation co-hosted by the Trinity Forum and the Church of the Advent. Dr. Lin is a self-described “scientific doxologist,” and he set the tone for a robust discussion of scientific advances in genome-specific cancer treatments and his work in rare genomics with these words from Psalm 8: “Lord, our Lord, how majestic is your name in all the earth!” The ultimate purpose of biology, Lin says, (not to mention technology, chemistry, and every other vocation) is to worship and learn more about our Creator. Faith does not belong in a “separate sphere” or on the sidelines. Instead, biblical faith both frames and motivates everything from his research to his funding strategy for the audacious entrepreneurial venture that is the Rare Genomics Institute. Studying Genetic Disorders: Awful Realities and Implications Through studying genetic anomalies—often one out of the three billion bases that make up the human genome—that predispose people to illness or cause disorders, Lin described his overarching awe and gratitude coming from discovery of how much often does work correctly to facilitate health and life. Imagine a photocopier, he said, that lost only one-in-three-billion bits of information. Each body is composed of around one trillion cells, and around the clock, each of these cells copies the entire bulk of genetic information with an accuracy that machines can’t touch. But Dr. Lin doesn’t allow his amazement to blind him to the magnitude of suffering caused when something goes wrong in the body. Lin is not a scientist who spends every waking moment gazing into a microscope or crunching daunting equations (although he does plenty of that, with aplomb); he raises his eyes from the molecular level to the human level, witnessing and empathizing with the struggles of patients. For example, he recalled meeting a young boy seeking new treatment options for a rare and excruciating genetic disorder. Lin was a medical student at the time, and he was tasked with delivering his team’s consensus to the little boy’s mother: There was nothing new to try—and her son’s suffering would likely continue. Lin watched remnants of hope dissolve from her face. He walked away resolved that there had to be something more he could do. The Rare Genomics Institute was launched as a result. In short, Rare Genomics “allows patients to crowdsource funds and genomes to accelerate research of their rare genetic diseases.” A January TED blog post paints a more complete picture of the project and introduces the problem Lin has set out to tackle:
Millions of people, many of them children, suffer from “orphan” diseases — illnesses so rare that no infrastructure exists to investigate or treat them… The [institute] puts hope and empowerment back in patients’ hands by connecting them with researchers, doctors and community support, and a crowdsourced funding platform.
A “Weird” Approach for Rare Diseases Patients served by Lin’s organization have the unusual and dignifying opportunity to help drive research designed to create cures for their own ailments. Lin describes this change as the beginning of a new model:
But I think this is the beginning of a paradigm shift. Even at TEDGlobal, John Wilbanks talking about more open data, and patients owning their own data. Slowly, patients are now owning their data, participating in their research and having more control. (There are even more extreme cases, where the patients are doing research themselves in their garages!) The research area we’re working in is pretty new in itself as well. Bringing together these new things with a twist makes us weird in what we do. But this unique combination allows for helping these patients who otherwise cannot be helped. So we’re proud that we’re weird!
Thankfully the healing “weirdness” doesn’t stop with individual patients. Banks of data and other resources shared across the research community are multiplying potential benefits from gains made on behalf of individuals. Harmonizing Doxologies The implication of the web of personal connections motivating and funding research could turn out to have an exponential growth trajectory. Surely such a compassionate twist to this double-helix-fixing development is a cause for praise—a material articulation of enthusiastic creativity on the part of Lin and his colleagues, and a gift worth rejoicing over for current and future recipients of tailor-made treatments. Of course, Dr. Lin is not the sole top-tier scientist inspired and instructed by the conviction that the discoveries of science reflect and draw us closer to our Creator. During the program introduction I spotted Jennifer Wiseman, chief of NASA’s ExoPlanets and Stellar Astrophysics Laboratory in the Astrophysics Science Division. One row back was Francis Collins, director of the National Institute of Health, renowned for his leadership of the Human Genome Project. I was reminded that if we listen, we can hear doxologies resounding through the elegant twists of the double helix, the ancient light captured in Dr. Wiseman’s deep-field telescope images and the reflections of people who take joy in work of many kinds. Lin concluded his talk the same way he began: “Lord, our Lord, how majestic is your name in all the earth.”