Lung Cancer Clinical Trials and Native Americans
*Please note: This slide show is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your doctor about any questions you may have regarding a medical condition.
How lung cancer affects Native Americans and Indigenous Peoples
Lung cancer is a leading cause of death from cancer among Native Americans, including those who identify as American Indian, Alaska Native, Pacific Islander, and Indigenous communities.
It is the second most commonly diagnosed cancer in Native American men and women. Native Americans are also more likely to be diagnosed with late-stage lung cancer. This is when treatment is less likely to succeed.
Disparities affecting Native Americans with lung cancer
These problems partly occur because Native American communities may be far from healthcare centers.
They may lack access to lung cancer experts or the latest technology.
Traditional healers have a strong role to play and can work with hospitals and other treatment providers.
Differences and genetic diversity among Indigenous Peoples
Native American communities are very diverse. Some communities are not recognized by the government or choose to remain anonymous.2
Native Americans from different communities have distinct languages, traditions, and often different genetic ancestry that affects their health and cancer risks.3
Effective lung cancer treatment and prevention for Native Americans means many communities must take part in clinical trials. Members of one community cannot provide enough information on whether something works well for everyone.
Helping providers understand Native American tobacco use
Tobacco is a traditional Native American crop with an important place in many tribal cultures. Some Native American communities have high tobacco use and others do not.
Using tobacco in ceremonies is not the same as being a heavy cigarette smoker. You may need to explain this carefully to your healthcare provider when you talk about tobacco and lung cancer risk.4 Lung cancer can happen in people who have never smoked.
Why Native Americans are needed in lung cancer clinical trials
Researchers are working hard on new ways to screen for, diagnose, and treat lung cancer, including for Native Americans.
Many of the most effective treatments work with your genetic makeup and immune system to fight cancer. However, most were developed with White volunteers because few Native Americans take part in clinical trials.5
Why is lack of participation in cancer clinical trials a problem for Native Americans?
Native Americans are approximately 3 percent of the US population by the 2020 census.6 However, only about one-tenth of 1 percent join cancer clinical trials.7
With so few Native Americans in trials, researchers do not have enough information to develop tests, drugs, and other treatments that will work well for everyone, including Indigenous peoples.
Why lack of Native American representation is a problem for clinical trials and Indigenous communities
The lack of Native American people in lung cancer clinical trials means little is known about the needs and characteristics of Indigenous people with lung cancer.8
Including Native Americans in clinical trials would help community members who receive treatment later. Those treatments would be partly developed on how they respond.
Why so few Native Americans take part in clinical trials: Historical and present-day abuses
Mistrust is one reason why few Native Americans take part in clinical trials. In the years between 1700 and early 1900, governments and medical organizations purposely killed many Indigenous people.
Vaccines were tested on Indigenous people in Canada in the early 20th century. In the 1970s, Native American women in the US were sterilized without their consent.2
As recently as the 2000s, the Havasupai people sued researchers who used their information to study more than they agreed to.2
How Native Americans can help our communities through clinical trials
In the last decade, clinical trial rules and processes have improved. The US Food and Drug Administration (FDA) supervises organizations that monitor trials.
It is important to ask your doctor or healthcare team about clinical trials. A trial may give you access to ground-breaking treatments. You will learn about the risks before deciding to join.
As part of a Native American community, you can make a valuable contribution to future tests and treatments for people with your ancestry and similar genetic background.
Important things for Native Americans to know about cancer clinical trials
It is important to know that researchers must explain trials completely, answer your questions, and get written consent before you join a trial. They must make sure you understand and agree to every part of the study.
It is wrong for them to do anything you did not know about or agree to. You can leave the trial at any time, even if nothing is wrong.
Questions for Native Americans to ask about trial participation
An organization called Native American Cancer Initiatives has questions for Native Americans to ask about clinical trials. They also have information on communicating with healthcare providers, who are often White. Communication styles can be different between groups, and these tips can help.
The American Indian Cancer Foundation is led by Native Americans. It offers free information, including on clinical trials.
To learn more, visit natamcancer.org and americanindiancancer.org.
Talking with your healthcare provider about clinical trials
Your healthcare provider may talk with you about clinical trials. If not, feel free to ask. You can also talk with your primary care doctor or oncologist, a tribal elder, a family member or a traditional healer. Shared decision-making is often important to patients.
Where can I find a lung cancer clinical trial?
In the United States, ClinicalTrials.gov is one place to search for trials. You may sign up at ResearchMatch.org or contact A Breath of Hope Lung Foundation for more information at abreathofhope.org/clinical-trials.
- American Indian Cancer Foundation. American Indian cancer burden. Available at: https://americanindiancancer.org/ai-an-cancer-burdens. Accessed February 22, 2022.
- Bordeaux SJ, Baca AW, Begay RL, et al. Designing inclusive HPV cancer vaccines and increasing uptake among Native Americans – A cultural perspective review. Curr Oncol. 2021;28(5):3705-3716. Published 2021 Sep 24. doi:10.3390/curroncol28050316
- National Cancer Institute, US National Institutes of Health. Cancer control in American Indian and Alaska Native populations: A conversation with Dr. Shobha Srinivasan. [Cancer Currents blog.] April 25, 2018. Available at: https://www.cancer.gov/news-events/cancer-currents-blog/2018/american-indian-alaska-native-cancer-control. Accessed February 21, 2022.
- Rivera MP, Katki HA, Tanner NT, et al. Addressing disparities in lung cancer screening eligibility and healthcare access. An Official American Thoracic Society Statement. Am J Respir Crit Care Med. 2020;202(7):e95-e112. doi:10.1164/rccm.202008-3053ST
- Hamel LM, Penner LA, Albrecht TL, Heath E, Gwede CK, Eggly S. Barriers to clinical trial enrollment in racial and ethnic minority patients with cancer. Cancer Control. 2016;23(4):327-337. doi:10.1177/107327481602300404
- 2020 Census: Native population increased by 86.5 percent. Indian Country Today. August 13, 2021. Available at: https://indiancountrytoday.com/news/2020-census-native-population-increased-by-86-5-percent. Accessed February 22, 2022.
- Kwiatkowski K, Coe K, Bailar JC, et al. Inclusion of minorities and women in cancer clinical trials, a decade later: have we improved? Cancer. 2013;119(16):2956-2963.
- American Indian Cancer Foundation and Minnesota Cancer Alliance. Native communities & cancer clinical trials. Available at: https://americanindiancancer.org/acif-resource/clinical-trial-for-cancer. Accessed February 23, 2022.