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FAQs: VOICES of Black Women Optional Blood Substudy 

About the Substudy

Historically, many medical studies have not sufficiently included diverse populations, including Black individuals. Blood samples and physical measurements can be used to understand many distinct aspects of health and disease, and it is important that research uses samples from a diverse group of individuals for us to understand how people may experience the same disease or treatment differently. 

We will use your sample and data only for health research. Human blood is a time capsule that can tell us about your past or present exposures and future disease risk.   

  • Researchers will study your blood sample to look at the genetic information you were born with as well as genetic changes that may have occurred in your body over time.  
  • Researchers may also study your blood for things that naturally occur in your body (such as cholesterol, hormones, and markers of immunity) as well as things you may be exposed to during your lifetime like environmental pollutants or infections. 

The historical exclusion of Black people from genetic research has resulted in a significant knowledge gap, hindering our understanding of genetic variations within this population. This omission contributes to disparities in healthcare outcomes, as research findings may not accurately reflect the diverse genetic factors that influence health. Your participation is essential for advancing personalized medicine and developing healthcare strategies that account for the genetic diversity within the Black population, ultimately promoting equitable and effective healthcare outcomes.

Every participant's contribution is vital. Historically, Black people have been underrepresented in research. When there are too few Black people in a study, scientists are not able to study things that are unique to (or more common in) Black individuals. These may be things you were born with or changes that happened to your body because of your life experiences. Scientists are also unable to confirm that medical tests and treatments will work the same way in populations that were not part of the studies that tested them.

For all these reasons, including Black people in research is crucial for a more comprehensive understanding of their risk and resilience to certain health conditions. 

Substudy Participation & Compensation

  1. Sign up for and consent to join using the VOICES of Black Women portal.
  2. Receive a kit in the mail, which will include all materials needed. It will also include instructions for how to make an appointment with an ACS lab partner at a location that is convenient for you.  
  3. You will need your collection kit at the time of your appointment. A medical professional will draw 30ml (about 2 tablespoons) of blood. This is similar to the amount drawn during a routine doctor’s visit. The medical professional will also collect your physical measurements (your height, weight, waist, and blood pressure).
  4. Within 24 hours after your blood draw, take a brief survey on the portal. This survey will ask about things like what medications you’re taking and when you had your last meal before giving blood.
  5. Once we receive your blood sample and process your survey, we’ll send instructions on how to redeem your $40 e-gift card as a thank you for your participation. 

You will be offered a $40 e-gift card to acknowledge your time and effort. After you provide your blood sample and complete the related survey, you will receive instructions on how to redeem or decline this e-gift card. 

If you join this substudy, the blood sample and any information you provide are a donation to the American Cancer Society research program. You will not be entitled to compensation for any use, products, data, other items, or information that's developed from the sample or data collected."

These products would not be based on your data alone, but on data from multiple participants.  

There will be no cost to you for participating in the substudy. However, there may be transportation costs to get to the blood donation facility if you choose that option.  

Scientific tests that are used for large group research, like the type we will do in the VOICES of Black Women, are different from an individual test done in your doctor’s office. Due to the complex nature of genetic and health data, it would be irresponsible for us to provide this information to participants without professional interpretation and guidance. Doing so may lead to unnecessary anxiety or misinterpretation, especially without comprehensive context and counseling. Maintaining a strict policy of not returning individual results helps prioritize the ethical considerations of privacy and avoids potential unintended consequences associated with disseminating complex genetic information.

However, we will keep you updated about any group research findings. If you have a personal concern about your health after reading about VOICES of Black Women group research findings, you should contact your health provider. 

You can withdraw (quit) from the substudy at any time after giving your consent. You can request that we destroy your blood sample or tell us that you do not want your sample or data to be a part of any new research projects. However, it is important to note that any data used in previous research projects will need to be maintained to ensure research integrity.    

If you join the substudy and later decide you want to withdraw (quit), please contact the research team at bloodsubstudy@cancer.org or call us at (800) 646-7853.   

Eligibility & Risk

No, you do not need to adjust your habits before the blood draw. You can eat, drink, and exercise as you normally do.

If you have concerns about giving blood due to these or other conditions, please check with your healthcare provider before enrolling in this substudy and providing a blood sample. They can provide personalized guidance based on your specific situation to ensure both your well-being and safety. If you do not have a healthcare provider, please err on the side of caution. There may be opportunities to provide a blood sample at a later date.    

Yes. While a cancer diagnosis and cancer treatments may affect some things in your blood, there is still a lot we can learn from your sample. Please check with your healthcare provider before giving a blood sample. 

Donating a 30 ml blood sample is safe and considered minimally invasive. Only a trained medical professional (phlebotomist) will collect your sample. The most common risks from donating this amount of blood are slight bruising or brief pain. Some people may become dizzy or feel faint. There is also a very small risk of infection. 

Security & Privacy

We have several security measures in place to keep your information safe. 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. 

Highly unlikely risks include the possibility that someone unauthorized could see your data without permission. We have several security measures in place to protect the information you provide to us, but there is also always a chance that these methods could fail. We want you to be fully informed about all potential risks, even if we think they are unlikely.  

 Your genetic information (without your name or personal identifying information) will only be shared with researchers to advance science. However, there is an extremely small chance that someone could get unauthorized access to your genetic information, despite the safeguards that we have in place.  

Even if this were to happen, there is a federal a law, the Genetic Information Nondiscrimination Act (GINA), that makes it illegal for health insurance companies, group health plans, and most employers to discriminate against you based on your genetic information. It is important to know that the GINA law does not apply to other types of insurance companies (such as life or disability insurance) or employers with fewer than 15 employees. 

Samples are stored at time of collection and will be used for future research studies. Although we won’t test for anything specific at the time of collection, your samples may be tested later for different types of drugs (e.g., prescription, over the counter, or other substances). Your sample and results will only be identified with a study ID. This information will strictly be used for health research and will not be shared or reported to your employer or law enforcement. 

To advance science, we may provide VOICES of Black Women study samples and data to other researchers for additional projects. This may include putting deidentified data in controlled-access databases as required by many scientific journals and funding agencies. These requirements are made with the idea that the timely sharing of resources can accelerate discoveries that will improve our ability to diagnose, treat, and prevent disease. Researchers will need to sign data use agreements before accessing the data or samples. We will remove any personal information that could identify you before your information is shared.  

Storage of Samples

We will freeze and securely store your blood sample at our biorepository until it is needed for a project.  A biorepository is a facility that collects and stores biological samples. Your sample will be labeled with your VOICES of Black Women study ID. Your name and other identifying information will not be stored with the sample. 

Your sample will be stored for the lifetime of the study. Since VOICES of Black Women will last for thirty or more years, it is possible that your blood sample will be used to complete multiple research projects throughout the study. Measuring things in the blood is very expensive, so not every person’s blood will be included in every research project. 

Your physical measurements and survey information will be stored with the other deidentified VOICES of Black Women data. This means that the information is also labeled with your study ID instead of your name and all identifying information is kept in a separate location.

 

Other Considerations

Yes, the VOICES 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. You can learn more about our research team here

 Absolutely.  Involving your family and community is encouraged. Their support and input can help you make an informed decision that aligns with your values and beliefs. 

No, your participation in this substudy will not affect your access to healthcare or insurance coverage. We will not willingly share information related to your sample with these parties and have safeguards in place to ensure that your information is fully protected by the law.  

Donating a blood sample is optional and will not affect your participation in VOICES of Black Women.