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Tania Simoncelli: Driving Change at the Nexus of Science and Society

Tania Simoncelli
AAAS Fellow Tania Simoncelli. Photo credit: Dale Ramos.

Throughout her career, Tania Simoncelli has been driven by a deep passion for harnessing the power of science and technology to address society’s toughest challenges. 

The AAAS Fellow currently serves as Vice President of Science in Society at the Chan Zuckerberg Initiative (CZI). Her program’s mission is to “bring science closer to the communities it aims to serve,” a value that mirrors Simoncelli’s career at large. At every stage – from the frontlines of environmental policy and genomics research to Supreme Court chambers and the White House – she focuses on helping community members, convening diverse stakeholders, and ensuring the work and practice of science are grounded in the interests and needs of society.

Simoncelli attributes her passion for science and its intersections with society to her undergraduate years. The Biology & Society major at Cornell University – then one of only two programs of the sort in the country – allowed her to explore and integrate her varied interests in environmental and health sciences, ethics and policy. Especially important were the mentors that supported her along the way. 

“I was fortunate to have incredible mentors at such a formative time, some that I have continued to consult with over the years. Sheila Jasanoff, Ph.D., taught me to think critically about science and technology – how decisions about emerging technologies were being made, who is or is not benefiting from science, and why? Carl Sagan inspired me to want to learn how to communicate science effectively and influence policy.”

Simoncelli saw firsthand how the ability to work across disciplines was essential for driving change in Washington, DC, where she spent her initial post-college years working in environmental policy. 

“I saw that subject matter experts were necessary but not sufficient for driving change. The ‘convener’ or the ‘facilitator’ – the people who understood which experts needed to be consulted in the first place and could translate between them – were as essential as the ‘experts’ in the room.” 

Simoncelli has embraced the convener role throughout her career, including on one stage with particularly high stakes. In 2003, she put a Ph.D. on hold for a short-term fellowship opportunity to advise the American Civil Liberties Union (ACLU) on life sciences developments and their implications for civil liberties. A two-year commitment evolved into a seven-year journey after a senior ACLU attorney agreed, at Simoncelli’s suggestion, to mount a lawsuit challenging the patenting of human genes.

“I had followed the gene patenting controversy since the 1990s. It was clear to me that these patents should never have been granted in the first place, and that they were undermining research and standing in the way of patient care,” she says. “The ACLU was uniquely poised to take on this challenge and to shed light on the need to bring greater public accountability to the patent system.” 

Simoncelli spent four years working with a small team of ACLU lawyers to identify a suitable defendant, develop the legal arguments, and recruit a multi-stakeholder coalition of plaintiffs and experts to support the suit – including Nobel prize-winning scientists, clinicians, research associations, legal scholars and patients. The case, Association for Molecular Pathology v. Myriad Genetics, ultimately made its way to the U.S. Supreme Court and in May 2013. The Court – to the surprise of many – unanimously ruled that naturally occurring DNA sequences are products of nature and not patent-eligible, effectively overturning thousands of patents and ending the practice of gene patenting in the United States.

“Nearly everyone we spoke with at the start of the case predicted we had just about a zero percent chance of winning. I believe that we ultimately prevailed because we were able to give voice to the full range of stakeholders who were negatively impacted by these patents, reframing this issue from a narrow, technical question to one that had significant societal implications,” she says.

Simoncelli transitioned from the ACLU to the U.S. Food and Drug Administration and then the White House Office of Science and Technology Policy. There, she worked across programs and agencies to advance progress on issues ranging from tobacco product regulation to forensic science reform and precision medicine. During this time, she became increasingly concerned about the ways that fragmentation of the health research ecosystem in the United States was undermining biomedical research progress. Soon after, she learned about a new philanthropic organization with a mission and values that resonated with her.

“I was inspired by the Chan Zuckerberg Initiative’s founders’ vision of a new kind of philanthropy – one that would leverage technology, community-driven solutions and collaboration to address complex challenges,” she says. “I was also excited by their bold science mission to cure, prevent or manage all disease by the end of the century. This was a call to action that demanded outside-of-the-box thinking and a willingness to venture beyond funding research as it’s traditionally done.”

To Simoncelli, patients – like those who were central in the Myriad case – are central stakeholders in disease research and hold the key to driving lasting, systemic change. She framed her initial work at CZI around a central question: How can we support and leverage the power of patients to accelerate research and drive progress against disease?

In 2019, she and her team of policy analysts, patient engagement experts and grantmakers launched the Rare As One Project, a first-of-its-kind effort to fund and support patient-led, rare disease foundations to strengthen their capacity, build collaborative research networks and collaborate with one another in their efforts to accelerate research in their disease areas.

“Rare disease is an area of profound unmet need,” Simoncelli says. These diseases are not well-served by traditional academic research or funding models. Gew patients are seen at any given academic research institution and progress is limited by a lack of data-sharing and collaboration, she explains. “We had seen examples where highly motivated, well-organized patient communities were able to overcome these challenges and transform the research landscape in their disease areas, but there was very little in the way of infrastructure or funding to support the work of these groups,” she says. “So we set out to design a program to learn directly from patient communities and to enable and scale this patient-driven approach.”

Three years later, the program supports a cohort of 50 organizations, with plans underway to directly fund research projects co-designed by patient groups and researchers in areas of rare neurodegenerative and pediatric inflammatory diseases. Simoncelli’s bet on patient communities is paying off.

“The progress of these groups has been incredibly inspiring. When we started, the vast majority of these organization’s leaders were unpaid, some groups had annual budgets of only a few thousand dollars, and prospects for developing treatments in most of these disease areas were bleak, at best,” she recalls. After just two years, these organizations had collectively engaged nearly 600 researchers from around the world, funded or partnered in 135 research projects, and participated in the launch of more than a dozen clinical trials. “By investing in and partnering with patient communities, we are investing in and enabling science,” Simoncelli says.

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