The Power of Unity: Why the Lung Cancer Genetics Study Matters

The lung cancer community is uniting behind a single, comprehensive research effort.

Imagine being diagnosed with the same disease that took away both of your parents. That’s what happened to me when I was diagnosed with lung cancer at 39 years old, but it wasn’t just about me; my kids were just six, eight, 10 and 12 years old. The thought of them facing the same fate or growing up without me was unbearable.

I was scared that I may have had something that passed down from my parents that could put my kids at risk too, but I was told that my cancer had no hereditary component. They said our family's history with lung cancer was just a tragic coincidence. It left me confused and frustrated. What if there were more to the story? What if there were a genetic component to lung cancer that has yet to be uncovered?

According to the American Cancer Society, lung cancer remains the leading cause of cancer death in the United States, affecting people of all ages, backgrounds and lifestyles. The reality is that anyone can get lung cancer, and that unpredictability makes research even more critical. Despite progress in treatment, gaps persist in our understanding of the disease. What if we could change that? What if new research could help predict risk, develop better treatments and improve outcomes?

The Lung Cancer Genetics Study, a groundbreaking collaboration between nearly two dozen lung cancer advocacy organizations and 23-and-Me, aims to explore the genetics of lung cancer. 23-and-Me’s expertise in genetics research and commitment to patient-centered research make it a valuable partner in this study.

For the first time, much of the lung cancer community is uniting behind a single, comprehensive research effort. Patients, advocates, doctors and researchers are joining forces to support a study that could reshape the landscape of lung cancer research and treatment. This collaboration is vital for pooling resources and knowledge beyond what any single institution could achieve.

As someone deeply involved in this community, I want to explain why this study is so important to me and address common concerns about this kind of research.

Why This Study is a Game Changer

Despite significant advances in lung cancer research and therapies, we still struggle to understand why some people develop the disease while others don’t. This study aims to bridge the gap. By analyzing genetic data from a large, diverse population of people with lung cancer, researchers seek to identify genetic variations linked to the disease. This approach would lead to more precise risk assessments, innovative therapies and deeper insights into lung cancer’s development and progression—offering real hope for the future.

Leading lung cancer researchers are excited by the potential progress the study represents. In a recent email, Dr. Christopher Amos, a lung cancer statistical geneticist and the Associate Director for Population Sciences at the University of New Mexico Cancer Center, wrote the following, “[The] Lung Cancer Genetics Study [will be] enormously beneficial to advancing knowledge about genetics and early stages of lung cancer development.”

Personal Connection

This study is personal for 23-and-Me’s CEO and co-founder, Anne Wojcicki. Anne’s sister Susan Wojcicki, who was also the former CEO of YouTube, recently passed from lung cancer. Susan was shocked to receive a diagnosis of metastatic lung cancer in late 2022. In a blog post that was published after her passing, Susan described how the more she learned, the more she realized there is an urgent need for better awareness, screening, and treatment. To help meet this need, Susan and her husband began a new focus on lung cancer research in their philanthropic efforts, including supporting the Lung Cancer Genetics Study. Susan’s legacy drives the commitment and dedication behind the study. It highlights the profound impact of individual experiences on advancing cancer research, fostering a sense of empathy and understanding throughout the entire initiative.

A Unique Opportunity for Unity and Progress

This collaboration symbolizes unity and hope for the lung cancer community. Patients and advocates are driving a movement that could change the future of lung cancer research and treatment. Creating a comprehensive registry and biobank offers a unique opportunity to break down barriers often caused by competition and proprietary interests. Participation is key to making this happen.

The partnership between 23andMe and the lung cancer community marks a shift toward more inclusive, patient-centered research. It recognizes that the voices and experiences of those directly impacted by the disease should shape the direction of lung cancer research.

Addressing Data Security Concerns

Data security is a key concern for many when participating in such studies.

While no system can guarantee absolute security, 23andMe has implemented robust measures to protect personal information. The study’s open-source model ensures that de-identified data is accessible only to approved researchers through a strict application process. Patient advocates will also be involved to ensure the research aligns with the lung cancer community’s needs and concerns.

The research is overseen by an Institutional Review Board, an independent ethics panel that ensures it meets government and ethical guidelines. This approach protects participants’ privacy and fosters trust and collaboration in the research process.

De-identified data from the study will be made available to approved non-profit researchers at no cost starting in the summer of 2025 so more researchers can make new discoveries.

Moving Forward with Hope

Each person’s experience with lung cancer is unique. With so much at stake, every patient’s story matters in helping us learn more about this disease. To date, nearly 1,500 people diagnosed with lung cancer have joined the study, and we hope to reach a total of 10,000 participants. All adults diagnosed with lung cancer and living in the United States are eligible to participate. Those who enroll will receive a 23-and-Me health plus ancestry kit at no cost.

The Lung Cancer Genetics Study isn’t just about data or research. It’s personal. By participating in this research, we are investing in a future where my kids—and other families—may not have to live with the same fear and uncertainty I’ve lived with. It’s that mission that unites us, and that hope that keeps me moving forward.

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