Your DNA might be the key to understanding lung cancer.

Come together to help improve detection, identify better treatments, and one day, find a cure.

The 23andMe Lung Cancer Genetics Study

With your help, the lung cancer community and scientists want to learn more about the genetics of people diagnosed with lung cancer and help improve care in the future. While research and targeted therapies have provided hope and progress for many, we still don't know much about the disease and its causes. Your help and participation in this study can change that.

Some of our collaborators are listed below:

“Studying the link between genetics and lung cancer can transform our understanding of risk and treatment. For the first time, the entire lung cancer community—patients, advocates, doctors, researchers—unite to support this vital study.”

Jill Feldman

Co-founder, EGFR Resisters, 23andMe Patient Advisory Board Member

Our goal

Our goal for this study is to understand more about how our genetics influence lung cancer so that we can work to improve detection, risk reduction, and care. Ultimately, we want to help advance research toward finding a cure. Your participation is vital in helping us reach this important goal.

Your participation is important

Lung cancer is the leading cause of cancer deaths and impacts people of all backgrounds and ethnicities. We want our study to represent all people so our research can have the biggest potential to benefit all people. By choosing to participate in our study you can make a difference.

23andMe can uniquely combine genetic data and self-reported information (such as survey answers) to accelerate research. Your data is an important part of this work. To help power discoveries, your data may be shared with qualified researchers, with support from advocacy organizations or non-profit institutions focused on lung cancer research. All identifying information, such as your name and contact information, will be removed from your responses and data.

The program also allows new 23andMe customers who meet the eligibility criteria to get the Health + Ancestry Service at no cost. For existing 23andMe customers who meet the eligibility criteria, we will ensure you are on our most up-to-date technology platform and support any upgrades if needed.

For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit Important test info

“I am committed to finding ways to improve screening and early detection of lung cancer. Understanding genetic factors that may increase the risk of developing lung cancer is an important part of this goal.”

Sandip Patel, MD, PhD

23andMe Scientific Advisory Board Member, Thoracic Medical Oncologist and Professor of Medicine at University of California San Diego School of Medicine

Why it matters

Participating in research could contribute to these long-term goals:

Identifying Risk Factors
Greater understanding of the role genetics and lifestyle factors play in lung cancer may help researchers identify risk factors that can impact you and your family.
Developing Personalized Treatments
Learning more about the link between genetics and lung cancer may eventually aid in developing new cancer therapies.
Improving Detection
Research advancements could be a step towards improving screening and identifying those at risk earlier.

How it works

Enroll
The first step is to complete our enrollment process here. You will be asked a series of questions to confirm your eligibility and also be asked to sign research consent forms. After enrolling, you will be asked to take the first survey of the study.
Provide a saliva sample
If you are new to 23andMe and are eligible to participate, you will register your 23andMe kit and provide a DNA sample (from your saliva) for genetic analysis. If you consent to storing your sample, we will securely store this saliva sample/DNA in our laboratory.
Surveys
Initial participation involves completing an annual online survey through your 23andMe mobile app or the 23andMe website. After you complete your first survey, we will send you a yearly email with a link to the next survey. We are collecting this information over time so we can better understand your experience of living with lung cancer. You can choose whether to continue to participate or not at any time.
Additional Activities
Throughout the study, we may also ask you to participate in additional activities, such as connecting your medical records or providing tumor biomarker information. This is completely optional, and we will email you to provide more information.
Sharing Your Research Information
1. Your data will be shared with qualified research collaborators. This includes advocacy organizations, clinical and/or academic research centers, pharmaceutical companies, non-profit foundations, and patient registries for lung cancer research.
2. Your data will also be shared in a scientific database controlled by a third party (not 23andMe) so that more researchers can make new discoveries to improve detection, risk reduction, and care.

Eligibility

You can participate in this study if:

You are 18 years or older
You live within the United States
You have ever been diagnosed with lung cancer

“People think of lung cancer as an automatic death sentence. But actually, there are options available, due to research, that weren't available before."

Denise Lee

Lung Cancer Research Participant

Privacy

You choose how your Personal Information is used and shared. The choice to participate in this research or not is yours. For additional information on the protection of your data, visit our privacy statement. Some highlights:

We will not share your individual-level data without your explicit consent. Individual-level data is information about a single individual, such as their genotypes, diseases or other traits or characteristics.
We will not share your genetic data with employers, insurance companies, or public databases without your explicit consent. Moreover, a federal law (Genetic Information Nondiscrimination Act, GINA) provides protection from employer and health insurance discrimination based on your genetics.
We will not release any individual-level personal information to law enforcement without your explicit consent unless we are required to do so by valid legal process. We have not shared any customer genetic data with law enforcement to date.*Date of last Transparency Report update See our Transparency Report for additional information.

"My journey with extensive-stage small cell lung cancer began in August 2018. I’m now in remission and use my voice to advocate for more research funding and to give hope to people newly diagnosed with this most deadly disease. Studies like the Lung Cancer Genetics Study may help identify genetic markers in the future, which is very exciting news!"

Maida Mangiameli, Lung Cancer Research Participant

"It’s so important to participate in research to move science forward. This really hit home for me when I found out that my uncle, who had lung cancer too, was in the clinical trial for the drug I am now taking. If he hadn’t participated in that research study, the drug might not have existed for me"

Wyatt Davila, Lung Cancer Research Participant

"When I was diagnosed it was such a shock to me. I was 35 years old, no risk factors, and it was only identified because I had a scan after a car accident. However, having discovered it at stage 1 feels like I had lung cancer handed to me on a silver platter. I was able to get surgery and continue living. I am now 8 years out from my diagnosis and have gotten married and had a baby. Without the car accident which led to early detection, who knows what may have happened. I hope that one day researchers find better tools to be able to help more people catch it early."

Yovana Maria Portillo, Lung Cancer Research Participant

"My journey with extensive-stage small cell lung cancer began in August 2018. I’m now in remission and use my voice to advocate for more research funding and to give hope to people newly diagnosed with this most deadly disease. Studies like the Lung Cancer Genetics Study may help identify genetic markers in the future, which is very exciting news!"

Maida Mangiameli, Lung Cancer Research Participant

"When I was diagnosed it was such a shock to me. I was 35 years old, no risk factors, and it was only identified because I had a scan after a car accident. However, having discovered it at stage 1 feels like I had lung cancer handed to me on a silver platter. I was able to get surgery and continue living. I am now 8 years out from my diagnosis and have gotten married and had a baby. Without the car accident which led to early detection, who knows what may have happened. I hope that one day researchers find better tools to be able to help more people catch it early."

Yovana Maria Portillo, Lung Cancer Research Participant

"My journey with extensive-stage small cell lung cancer began in August 2018. I’m now in remission and use my voice to advocate for more research funding and to give hope to people newly diagnosed with this most deadly disease. Studies like the Lung Cancer Genetics Study may help identify genetic markers in the future, which is very exciting news!"

Maida Mangiameli, Lung Cancer Research Participant

Frequently Asked Questions

Participation

What is the Lung Cancer Genetics Study?

This is a research study focused on better understanding the genetics of people diagnosed with lung cancer so that we can work to improve detection, risk reduction, and care. While research and targeted therapies have provided hope and progress for many, there’s still a lot we don’t know about the disease and its causes. Your help and participation in this study can change that.

With your participation/help, the lung cancer community and scientists are aiming to learn more about the genetics of people living with lung cancer to help improve care in the future. Right now, research and targeted therapies are making a difference for people who have lung cancer, but there is still much we don’t know about the disease and its causes. With your participation in this study, we hope to one day change that.

Why is 23andMe studying lung cancer?

The unique 23andMe research platform enables a large group of individuals to come together to provide valuable data for scientists studying lung cancer. This research data includes Genetic Information (using DNA from saliva) and Self-Reported Information about each participant's unique experiences (using responses from online surveys), as well as, but not limited to, additional data sources such as medical records and tumor biomarker information.

We believe that this study will enhance research into lung cancer by:

Bringing together a large group of people to better understand how genetics may influence lung cancer.
Expanding the geographic reach of the research study by enabling participation from home.
Removing some of the time and cost barriers that can slow progress in other types of studies.

How many people will participate in this study?

Our goal is to enroll 10,000 participants

We have a goal of recruiting 10,000 individuals diagnosed with lung cancer, with no restrictions on the type of lung cancer, stage of disease, age, gender, smoking status, biomarker, etc.

Who is eligible to join this study?

If you have been diagnosed with lung cancer, are over 18 years or older, and live in the United States, you may be eligible to join this study. To enroll, you will be asked to answer screening questions and complete study consents. At the end of the enrollment process, we will inform you if you are eligible to join the study.

What do I need to do to participate?

Enroll
The first step is to complete our enrollment process here. You will be asked a series of questions to confirm your eligibility and also be asked to sign research consent forms. After enrolling, you will be asked to take the first survey of the study.
Provide a saliva sample

If you are new to 23andMe and are eligible to participate, you will register your 23andMe kit and provide a DNA sample (from your saliva) for genetic analysis. If you consent to storing your sample, we will securely store this saliva sample/DNA in our laboratory.
Surveys
Initial participation involves completing an annual online survey through your 23andMe mobile app or the 23andMe website. After you complete your first survey, we will send you a yearly email with a link to the next survey.
We are collecting this information over time so we can better understand your experience of living with lung cancer. You can choose whether to continue to participate or not at any time.
Additional Activities
Throughout the study, we may also ask you to participate in additional activities, such as connecting your medical records or providing tumor biomarker information. This is completely optional, and we will email you to provide more information.
Sharing Your Research Information
1. Your data will be shared with qualified research collaborators. This includes advocacy organizations, clinical and/or academic research centers, pharmaceutical companies, non-profit foundations, and patient registries for lung cancer research.
2. Your data will also be shared in a scientific database controlled by a third party (not 23andMe) so that more researchers can make new discoveries to improve detection, risk reduction, and care.

Can you tell me more about the study activities?

This study will collect data in several forms. Participation involves completing an annual survey through your 23andMe mobile app or the 23andMe website. After you complete your first survey, we will send you a yearly email with a link to the next survey.

In addition to completing surveys, we may ask for your permission to link data from other sources such as, but not limited to, your medical records or tumor biomarker data. This additional data will supplement the data you provide to 23andMe and help qualified researchers enable earlier detection and advance research toward finding a cure in the future.

What does it mean to be a "research participant" in the Lung Cancer Genetics Study?

Being a 23andMe research participant means that you will agree to contribute your Genetic Information, Self-Reported Information, and data from other sources such as, but not limited to, your medical records or tumor biomarker data data, for research purposes. There are many aspects to being a research participant. We have summarized the most important ones on this page. If you have more questions, you can contact us at lung-cancer@23andme.com.

Can you tell me more about biobanking my sample?

This study includes a Consent for Sample Storage and Additional Analyses, which is optional for study participation. This biobanking consent applies to any biological specimens (including saliva, blood, microbiome, tissue samples, etc.) you provide to 23andMe as part of a 23andMe Research study, such as the saliva provided via the 23andMe kit.

Biological samples you have provided to your healthcare provider will not be affected by agreeing to the Consent for Sample Storage and Additional Analyses.

What does it mean that my data will be shared in a scientific database?

Your individual-level Research Information will be put in a controlled-access database controlled by a third party (not 23andMe). This means that only qualified research collaborators who apply for access, agree to certain terms and conditions, and are approved by database administrators may access study data. The database administrators (not 23andMe) will review each request for your information before releasing it to ensure that the proposed research matches what you have agreed to in the study consent form(s) and the research abides by all applicable federal and state laws and regulations.

Data in the database will be individual-level Research Information (stripped of Registration Information, such as your name or contact information), and encrypted when shared with approved researchers. The following individual-level data may be included in the database:

Age, sex assigned at birth, ethnicity, zip code
Genetic and genomic data
Information on your disease diagnosis, treatment, and outcomes from your medical records
Your self-reported survey answers
Information that you share from your mobile or wearable devices (i.e., Apple Health™ or Google FitTM app or others which may include electronic medical records)
Data acquired from publicly available records such as the CDC NDI and other databases, biobanks, or repositories.

There is no limit on the length of time that your Research Information may be kept by the database.

What will I get by participating in this study?

There is no compensation for participating in this study. New customers may receive 23andMe Health + Ancestry Service at no cost, which offers over 150 personalized genetic reports on your health, traits and ancestry based on your DNA. Existing customers who are not on our most up-to-date genotyping platforms will be provided the opportunity to upgrade to our current genotyping platform at no cost. Existing customers who currently have access to the Ancestry Service will be upgraded to the Health + Ancestry Service at no cost. Participants may choose to opt out of receiving health reports.

For important information and limitations regarding each genetic health risk and carrier status report included in our 23andMe Health + Ancestry Service, visit 23andme.com/test-info/

How is participating in this study different from genetic testing I received from my healthcare provider?

Eligible participants will receive access to the 23andMe Health + Ancestry Service, which offers over 150 personalized genetic reports on your health, traits and ancestry based on your DNA. At this time, the 23andMe Health + Ancestry Service does not include a lung cancer-related health report. 23andMe reports do not diagnose any health conditions or provide medical advice. For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit 23andme.com/test-info/.

Who can I contact if I have more questions?

Please contact lung-cancer@23andme.com if you have additional questions.

What are the risks of being a research participant?

Your participation means that we will collect, store and share information about you. If 23andMe shares your Research Information with a scientific database or a qualified research collaborator, your data will be stored in various locations; this action cannot be undone and your data will not be returned to 23andMe. This may increase the risk of a security breach that could lead to the leak of your data. In the event of a breach, your information may become available to your employer, insurance company, or other individuals you did not want to inform. We believe the chance that someone could identify you is very small, but the risk may grow in the future if people come up with new ways of tracing information. There are currently laws that prevent your employer and health insurance provider from using your genetic information against you. However, these laws may not fully protect you in every situation.
If you have not been previously genotyped on our platform and choose access to the 23andMe Ancestry Service, you may have an emotional response to learning new things about your genetics and ancestry.
Please refer to our Terms of Service and Privacy Statement for more details about the risks of being genotyped.

What are the benefits of being a research participant?

This is a new opportunity to participate in lung cancer genetics research. As a research participant, you:

Could play a role in helping researchers understand the relationship between the disease and genetics.
Will be kept informed of the discovery process as research advances.
Will have the option to learn more about your genetic health and ancestry.

Do the 23andMe Terms of Service apply to participants in the Lung Cancer Genetics Study?

If you agree to participate in the Lung Cancer Genetics Study, your participation includes the use of a 23andMe DNA kit and optional access to the 23andMe Service at no cost. As part of joining this study you will be required to agree to the 23andMe Terms of Service document.

We want to make sure you understand that while participating in the study activities described below, the following sections of the Terms of Service will not apply to the extent they prevent you from pursuing a claim if you suffer a study-related injury:

Section 4 ("Indemnity")
Section 4 ("Disclaimer of Warranties")
Section 4 ("Limitation of Liability")
Section 5(f) ("Term for Cause of Action")

Study activities include:

Providing a saliva sample for genetic analysis using a 23andMe DNA kit.
Initial participation involves completing up to four online surveys per year through your 23andMe mobile app or the 23andMe website. After you complete your first set of surveys, we will send you a yearly email with a link to the next set of surveys. You can choose whether to continue to participate or not at any time.
Additional Activities
Throughout the study, we may also ask you to participate in additional activities, such as providing your medical records or tumor biomarker information. This is completely optional.

Please note, however, that if you choose to use any of 23andMe's products, software, services, and website, outside of your participation in these study activities, you will be, just like all users of 23andMe's products, software, services, and website, subject to the 23andMe Terms of Service.

Will this study help me find better treatments?

Joining this study will not affect your diagnosis or treatment options today. Participation allows you to contribute to an effort to help advance lung cancer research in the future.

By participating, will I receive a genetic report on my disease?

At this time, the 23andMe Health + Ancestry Service does not include a lung cancer-related health report. Eligible participants will receive access to the 23andMe Health + Ancestry Service, which offers over 150 personalized genetic reports on your health, traits and ancestry based on your DNA. For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit 23andme.com/test-info/.

Why is this study only available in the United States?

At this time, enrollment in the Lung Cancer Genetics Study is limited to United States residents. We currently do not have plans to expand this study to residents of other countries.

Research projects like this must be carried out under the supervision of a research ethics committee. In the United States this is called an Institutional Review Board (IRB), which is an independent ethics panel that ensures research is conducted in accordance with government and ethical guidelines. 23andMe has approval from our IRB to conduct the Lung Cancer Genetics Study only in the United States, and therefore we are not authorized to enroll participants who live outside the United States at this time.

What if I lose my saliva collection kit or forget to return it?

If you misplace your kit, don't worry. Email us at lung-cancer@23andme.com and we will mail you a new one at no cost. Once you're enrolled, we'll send you reminders to return your kit.

What if I no longer want to participate in this research?

You can withdraw from research at any time by changing your consent status in your Account Settings. Email us at lung-cancer@23andme.com and we can help you.

Who can I contact if I have more questions about this study?

We are here to answer your questions. Email us at lung-cancer@23andme.com and we will do our best to get back to you within two weeks.

Will there be more opportunities to contribute to lung cancer research?

As more people join this study and our research scientists start to look at the data, there may be an opportunity to participate in additional studies to enhance the research for lung cancer. For example, we may also ask you to complete short follow-up surveys regarding your experience with lung cancer over time.

If there are any additional study or survey opportunities, 23andMe's Health + Ancestry Service will let you know about them through your 23andMe.com account and/or email.

What happens if a product is developed as a result of this research?

Research discoveries may lead to products or inventions that have value and can be sold by 23andMe or qualified research collaborators. If something like that happens, participants do not receive any financial benefits.

How is this study funded?

The Lung Cancer Genetics Study is funded with support from Troper Wojcicki Philanthropies.

Existing and New Customers

Who are "existing customers" and can they participate in this study?

Existing customers are customers who purchased a 23andMe kit prior to joining the study. We welcome any customer who wants to participate in this study, as long as they meet the eligibility criteria listed above and enroll in the study here.

Existing customers who are not on our most up-to-date genotyping platforms will be provided the opportunity to upgrade to our current genotyping platform at no cost. Existing customers who currently have access to the Ancestry Service will be upgraded to the Health + Ancestry Service at no cost. Participants may choose to opt out of receiving health reports. For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit 23andme.com/test-info/.

No customers currently receive health reports on lung cancer.

Who are "new customers" and can they participate in this study?

New customers have not yet participated in 23andMe’s services and have not had their saliva analyzed prior to enrolling in a study. If they enroll in this study and meet the eligibility criteria, new customers will receive the 23andMe® Health + Ancestry Service, including a DNA test kit, at no cost. For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit 23andme.com/test-info/.

23andMe® Health + Ancestry Service

What is the 23andMe Health + Ancestry Service?

23andMe Health + Ancestry Service offers over 150 personalized genetic reports on your health, traits and ancestry based on your DNA. You can learn more about this service at 23andMe.com.

If you are new to 23andMe, as part of your participation in this research study, you will receive complimentary access to 23andMe's Health + Ancestry Service. Learn more about the 23andMe Health + Ancestry Service here. For important information and limitations regarding each genetic health risk and carrier status report included in our Health + Ancestry Service, visit 23andme.com/test-info/.

Existing 23andMe customers who are not on our most up-to-date genotyping platforms will be provided the opportunity to upgrade to our current genotyping platform at no cost. Existing customers who currently have access to the Ancestry Service will be given an opportunity to upgrade to the Health + Ancestry Service at no cost. Participants may choose to opt out of receiving health reports.

How long will I have access to my account with 23andMe?

You will continue to have access to your 23andMe account and will receive report updates as long as the Genetic Information referenced in those updates is generated from your original DNA sample. If a future feature or report relies on DNA results not included in your initial analysis, you may need to purchase a chip upgrade and/or subscription to access that feature or report. Any future upgrades beyond the current technology are not included as a benefit to participation.

Security and Data Sharing

How do you protect the confidentiality of my data?

23andMe uses a range of physical, technical, and administrative procedures to protect the privacy of your Personal Information. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe policies and procedures minimize the chance that a breach could take place.
If 23andMe, our research collaborators, or future researchers publish data in a peer-reviewed journal, only data summaries, or combined data from many individuals, will be published.
You can read more about our Privacy Statement and Security Measures here.
Several laws at the federal and state levels help protect people against genetic discrimination. In particular, a federal law called the Genetic Information Nondiscrimination Act (GINA) is designed to protect people from this form of discrimination. This law makes it illegal for health insurance providers to use or require genetic information to make decisions about a person's insurance eligibility or coverage. It also makes it illegal for employers to use a person's genetic information when making decisions about hiring, promotion, and several other terms of employment. We will not provide any person’s data (genetic or non-genetic) to an insurance company or employer. GINA and other laws do not protect people from genetic discrimination in every circumstance.
The third party controllers of the scientific database (not 23andMe) will take reasonable efforts to keep the information in the scientific database protected and secure. Data in the database will be individual-level Research Information (stripped of Registration Information), and encrypted when shared with approved researchers.

***As of September 24, 2024

Note: Scientific and Patient Advisory Board members may receive compensation for their time

Shop by service

Shop by interest