Lung cancer genetics study launches open-source data platform to research community

Qualified researchers can now get no-cost access to a powerful new tool that opens lung cancer data for research breakthroughs

2025-09-08

(Press-News.org) 23andMe Research Institute, Troper Wojcicki Philanthropies (TWP), and Lifebit today announced the official launch of an open-source data platform for the Lung Cancer Genetics Study. Launched in 2024, the Lung Cancer Genetics Study aims to enroll 10,000 individuals diagnosed with lung cancer by 2027. The study already includes more than 1,200 participants and is one of the most diverse cohorts ever assembled for lung cancer genetics research.

This marks a new phase in the study — with researchers now able to request access to de-identified data from consenting study participants and begin conducting analyses. This unique research program is powered by Lifebit’s advanced end-to-end health data platform.

Approved researchers who undergo a rigorous application process can gain access to a unique lung cancer dataset at no cost through Lifebit’s Trusted Research Environment (TRE). This resource includes germline genotyping, self-reported health and exposure data, information on known cancer-causing driver mutations, and more. Longitudinal data sets will also be added over time. Interested researchers can begin the data access request process by contacting TWP study program manager Caitlin Nichols at caitlin@twphilanthropies.org.

“More people die of lung cancer each year than breast, colon, and prostate cancer combined, yet it is one of the least funded for research. The 23andMe Lung Cancer Genetics Study utilizes 23andMe’s platform to attract and engage lung cancer participants from all over the country in research to provide critical data to researchers and enable them to make meaningful discoveries. This next phase of the study, set at no cost to qualified researchers, is a way to remove data silos so that the best minds can work on unlocking the genetic insights that may lead to a cure,” said Anne Wojcicki, Founder and CEO of the 23andMe Research Institute. “My sister, Susan Wojcicki, was diagnosed with lung cancer in 2023 and unfortunately passed away in 2025. She was passionate about understanding the science behind lung cancer so future generations could prevent the disease and treat it. The 23andMe Lung Cancer community is a step towards achieving that.”

The research platform is powered by Lifebit’s newly announced Health Data Ecosystem, the world’s most comprehensive and AI-enhanced end-to-end solution for health data operations — already trusted by organizations including NIH, Genomics England, and 23andMe Research Institute.

“This is not just a TRE — this is a full ecosystem that’s purpose-built to power meaningful discovery,” said Dr. Maria Dunford, CEO of Lifebit. “By launching the full suite of Lifebit solutions in support of the Lung Cancer Genetics Study, we’re ensuring that patient-driven research happens faster, more securely, and with maximum impact.”

Patient-Led Research, Now Federated and Scalable
Developed by TWP in partnership with 23andMe Research Institute and more than 20 advocacy groups, the Lung Cancer Genetics Study was created to address major gaps in the field, including by eliminating institutional data silos that prevent collaboration and slow scientific progress. With the platform now live on Lifebit, researchers gain access to powerful data resources and advanced capabilities, including:

Access to Unique Datasets — Many study participants lack traditional risk factors or are underrepresented in typical research cohorts. Notably, among the first 991 genotyped participants, nearly three-quarters are women and nearly half report no significant exposure to tobacco smoke. Researchers can request access by submitting a detailed study proposal and security questionnaire.

Patient Partnership — Patients participate in the data governance process and help shape future research by reviewing and providing feedback on proposed research projects.

Secure & Compliant Research Environment — Approved researchers can perform advanced analyses on lung cancer data without downloading sensitive files, using a battle-tested platform with fine-grained access controls that meet DoD, NIST, GDPR, and HIPAA standards.

Research Transparency — Participant-friendly summaries of approved research projects will be shared publicly along with resulting scientific publications, reinforcing transparency for study participants and the scientific community.

Integration with Broader Datasets — Authorized users can advance their research by integrating multi-modal data from 270M+ patients on Lifebit’s platform.

“This platform reflects our commitment to building a resource that truly serves both patients and the scientific community, leveraging technology,” said Nadia Litterman, PhD, Director of Scientific Affairs and Partnerships at Troper Wojcicki Philanthropies. “We’re delivering more than a data system — we’re enabling an entirely new model for research equity and access.”

Anyone who has been diagnosed with lung cancer can learn more and enroll in the study at 23andme.com/lung-cancer.

Researchers interested in applying for data access and submitting a proposal can learn more about the study at the poster presented by 23andMe Research Institute at the IASLC 2025 World Conference on Lung Cancer hosted by the International Association for the Study of Lung Cancer (Poster #EP.01.17) and begin the data access request process by contacting study program manager Caitlin Nichols at caitlin@twphilanthropies.org.

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About 23andMe Research Institute

23andMe Research Institute is a nonprofit medical research organization that enables people everywhere to access their genetic information, learn about themselves and participate in the world’s largest crowdsourced research initiative. The Institute aims to be the world’s most significant contributor to scientific advancement, uniting people with the common goal of improving health and deepening our understanding of DNA — the code of life.

About Lifebit
Lifebit is the leader in federated, secure, and AI-powered health data platforms. Supporting more than 270 million patient records globally, Lifebit delivers end-to-end solutions for governments, health systems, and industry to manage, govern, and operationalize biomedical data.

About Troper Wojcicki Philanthropies
Troper Wojcicki Philanthropies (TWP) represents the family foundation and charitable initiatives of Susan Wojcicki and Dennis Troper. TWP deploys philanthropy and mission-related investments to organizations that are accelerating cancer research, tackling climate change, and advancing human rights. For the last 15 years, 30% of TWP’s funding has been dedicated to advancing cancer research, including lung cancer. Lung cancer research remains a priority for TWP in honor of Susan, who passed away in 2024 of lung cancer.

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