The VOICES of Black Women is a study led by the American Cancer Society. The focus of this study is to better understand cancer and other health conditions among Black women. Participation in VOICES involves completing an online health and life history survey at enrollment and updating your health information twice a year for at least 30 years. Results from this study will help inform how to improve the health of Black women for generations to come.
Our goal is to enroll at least 100,000 Black women in the US between 25 and 55 years of age. In 2023, we enrolled women in Georgia and Virginia who have never had cancer. Registration will open in other U.S. states and Washington D.C.in 2024! View eligibility requirements.
VOICES is funded by the American Cancer Society and run by the Population Science department. The Population Science department has conducted population studies like VOICES since the 1950’s and publishes original research on the causes and prevention of cancer. We also conduct research focused on addressing the needs of cancer survivors.
The study will last for at least 30 years. Because lived experiences can change with time and it can take many years for cancer and other diseases to develop, we need to collect information over time. The more information you provide over the course of the study the better we can understand the health of Black women.
Yes. Since this study is online, you will need to have access to internet service or a cell phone to participate. If you do not have access to a personal computer or an internet-enabled device, you may want to check for locations in your community that offer free computer or internet access. These vary by community but some libraries, community centers, or parks provide these services. If you qualify, the federal Affordable Connectivity Program also provides internet and computer discounts.
There will be no cost to you for participating in this study.
We honor and value the time participants will give to this study, but due to its size (100,000 participants), you will not be paid to enroll in the VOICES of Black Women. In the future, we may invite you to participate in additional VOICES research activities beyond filling out online surveys. Some of these activities will offer a small amount of compensation if you agree to participate in them.
Yes, the research team is committed to cultural sensitivity and diversity. We’ve actively sought input from individuals who understand and respect the unique concerns of the Black community. Meet the team.
Thank you for your interest and willingness to support outreach for the VOICES of Black Women study. It is with dedicated individuals like you that we will be able to successfully spread the word about this important initiative throughout communities nationwide. To ensure that we have all of the necessary information about your outreach opportunities and efficiently connect you with the best person and/or resources to support your efforts, please complete this brief VOICES Intake Form.
VOICES of Black Women is enrolling people who:
- are biologically female or identify as a woman.
- identify as Black.
- do not have history of cancer (except basal or squamous skin cancer).
- are between the ages of 25 and 55 years.
- live in one of our study enrollment states. Enrollment will be open in Georgia and Virginia starting October 2023. We will open enrollment across 20 states and Washington D.C. in 2024. See if we’ll be enrolling in your state.
The VOICES of Black Women seeks to understand the lived experiences of individuals who navigate their daily lives as Black women. As such, our study encompasses women of African descent, including but not limited to African American, African-Caribbean, African-European, and similar backgrounds. Race and ethnicity are ideas that were created without scientific or biological meaning but still impact many aspects of life. Studying race and ethnicity can help us examine differences and inequities in health, healthcare, medical practice, education, and more.
In this study, a woman is defined as an individual who is biologically female (assigned female sex at birth) and/or self-identifies as a woman. Our primary goal is to understand the lived experiences of Black women residing in the United States and how these experiences may impact the development of cancer and other diseases.
Currently, we are trying to understand what factors lead to the development of cancer diagnoses. Once a person has cancer, their body has been affected by the disease and its treatments. In our research on the causes of cancer, we would not be able to tell the difference between something that may have led to developing cancer and something that resulted from cancer. Although you aren’t eligible to participate, please spread the word about VOICES by sharing this study with 3 others you know.
Cancer generally occurs later in life, but much of what may affect our risk of developing cancer may take place at younger ages. We chose the lower age of 25 because cancer is more common as we get older so if we enroll women who are too young, it will take longer to study much of what we are trying to learn. We chose the upper age of 55 because we wanted women to be able to share and remember information accurately, and remembering things from earlier in life can be harder as we get older. By choosing this age range, we are well-positioned to study the life experiences of Black women with accuracy and without having to wait longer to find the answers we all hope to uncover.
Participants within 6 months of their 25th birthday can enroll.
Unfortunately, the cutoff age to enroll is 55 years old. Although you aren’t eligible to participate. We encourage you to spread the word about VOICES by sharing this study with 3 others you know.
I am pregnant, have just had surgery, or have medical condition besides cancer. Can I still participate in VOICES?
Yes, you may participate in VOICES. This study only involves filling out surveys and does not include any procedures that would interfere with your pregnancy.
According to the U.S. Census, there are roughly 8.5. million Black women aged 25-55 years in the US. Of these, more than 90% (approximately 8 million) live in the 20 states where we will be enrolling. Focusing on these 20 states will allow us to effectively use our resources.
As a participant, you will receive e-newsletters containing study highlights and updates. You will also be able to keep up with VOICES updates by visiting your participant portal.
Black women are underrepresented in research. The information that you provide will contribute to research that can improve the health of Black women. If Black women are not included in research studies scientists will not know if we can apply what we have learned from studies of other race groups to Black women. This means your participation in this study can help ensure that the experiences unique to Black women are included in research. It also means that the information learned from this research can be applied to strategies to benefit the health of Black women.
Yes. We start with women who have never been diagnosed with cancer because we want to learn about what may affect your risk of being diagnosed with cancer. But if you develop cancer, we want to continue collecting information from you so we can also understand ways to improve the health of Black women after a cancer diagnosis. The goal of the VOICES of Black Women is to learn how to improve the health of Black women, and this includes before and after a cancer diagnosis.
The American Cancer Society provides support and resources to individuals affected by cancer. We understand that receiving a cancer diagnosis can be overwhelming and we can help connect you with resources to support you through cancer diagnosis. Please check out cancer.org for information on how the American Cancer Society can help you navigate this difficult time. We would further seek to understand your experiences through our research and ask that you remain engaged in VOICES to ensure that Black women experience the best possible outcomes following a cancer diagnosis.
We may ask you for permission to get a copy of your medical records. This is optional and you will still be enrolled in VOICES if you say no. The reason we may ask for your medical record is to get more information about a cancer or other disease diagnosis and its treatment. We may also ask your permission to contact the hospital where you were treated for a sample of the tissue taken to diagnose or treat your cancer, such as a biopsy.
An Institutional Review Board (IRB) is a group of people whose role is to protect the rights and welfare of human research participants. The Emory University IRB is the IRB for VOICES. The Emory IRB will continue to make sure that the VOICES participants rights are being upheld throughout the entire study.
Agencies that make rules and policies about health research have the right to review research records if they ask. Those with the right to look at your study records include the Institutional Review Board (IRB) for The VOICES of Black Women at Emory University.
Study records can also be opened by court order. In the unlikely event that we receive a court order or subpoena for your record, we will protect your information to the extent allowed by law.
We will store your information securely. Your personal identifying information (like name and Social Security number) will be kept separately from other data you provide us for this study. When your information is used in research studies, a study ID will be used instead of your name or other identifying information. Your name and other identifying information will never appear when we present or publish the study results.
To “deidentify” means to remove any information that would identify a participant. Instead of your name, we will use your study ID to identify you when we conduct research analyses or share research data with other researchers. We will require that the researchers make no attempt to identify you, nor share the data with anyone else without our permission.
The primary purpose of this study is to conduct research analyses to understand cancer risk factors among Black women. Qualified researchers and statisticians will analyze data on the VOICES study population to draw meaningful insights and develop recommendations for cancer prevention and control strategies. For example, results from our past studies have contributed to building nutrition and physical activity guidelines for cancer prevention. While these findings may contribute to scientific publications, presentations, or reports, your individual data will always remain anonymous.
We are committed to conducting this study with the highest ethical standards and in compliance with applicable regulations. Your personal information will be kept strictly confidential and will not be shared with any unauthorized individuals or organizations. Our research study adheres to applicable laws and regulations, including data protection laws to ensure the privacy and security of your data and we use appropriate ethical approvals from our research ethics committees.
In some cases, we may collaborate with other research institutions or organizations to further our research objectives. However, any data shared will be de-identified to ensure privacy and confidentiality. Research activities will be overseen by the Emory Institutional Review Board (IRB) to protect the rights and welfare of human participants.
By signing the informed consent, you are giving us permission to enroll you in the study. Researchers are required to explain what will be involved in the research study to anyone who is considering participation, and to get written confirmation that the person is voluntarily participating. This is called informed consent. https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/index.html
By signing the HIPAA form you are voluntarily giving permission to the American Cancer Society Population Science Department to use your health information as part of the research study. The privacy of those records is protected by law.
Common examples of PHI include names, dates of birth, addresses, phone numbers, email addresses, Social Security numbers, and health care records.
You can withdraw (quit) at any time after giving your consent. If you decide you want to withdraw, please contact the research team at [email protected] or call us at (800) 494 4113. You have two choices:
- You can choose to stop filling out surveys but allow the American Cancer Society to keep and use the research data you have already contributed.
- You can choose to stop filling out surveys and decide that you do not want the information you provided for The VOICES of Black Women to be used in new research projects.
Importantly, any data used in previous research studies will be maintained to ensure research integrity, and verify previous findings, as needed. Your historical data will continue to be protected.