Study Frequently Asked Questions
What participation will mean to you:
If I participate in the study, what will I do?
You will sign a consent form, complete surveys about you, your health, and your family’s health history, give a blood or saliva sample for DNA testing, and allow the study team to access your medical records. You will receive a report that will tell you about your personal risk for some common health conditions.
How long will I be in the study?
You will be in the study through 2025.
What is the risk report and what will it tell me?
The study uses your genetic information, family health history, and medical history to see if you have an increased risk of getting some common health conditions. The risk report will tell you if the study finds that you have an increased risk of developing some common health conditions such as diabetes, heart disease, or cancer. If you are at increased risk, your doctor can help you understand what you can do to reduce your risk.
When will I learn my results?
About a year after you sign up for the study, you will get a health risk report from the site that recruiting you. You will receive a link to a report about your risk of certain conditions.
The results will also be put in your medical record.
Will I receive payment if I’m part of this study?
You will receive monetary compensation for completing the study which includes filling out surveys and providing a sample to look at your DNA.
Could anything bad happen to me?
Taking blood may cause some pain, bleeding, or bruising. Rarely, taking blood may cause fainting or infection. Providing a saliva sample is not painful, but it may cause temporary dry mouth.
If your report shows you have an increased risk for a condition, you may feel worried or anxious. You can talk with the study team or your doctor to discuss your concerns.
Some people may feel that having an increased risk for a condition may make others look down on them. If you are worried about this, please discuss it with the study team or your doctor.
I am not sure about whether I should take part or not. What should I do?
It may help to think a while before making a decision. You may find it helpful to discuss with your friends and family and with your doctor. If you have specific questions we have not addressed, please ask the study team. You do not need to take part if you are unsure.
This study aims to include more people from diverse ethnic and racial backgrounds. Why is that important?
In the past, genetic studies have not included enough people who are Latina/o, Black, African American, Asian, Pacific Islanders, Native American, Alaska Native, or Middle Eastern. Participation by people from these racial and ethnic backgrounds is important. We want to help understand how unique genetic information found in these groups relates to their health and risk of developing a disease. The inclusion of people from diverse backgrounds also helps scientists develop better therapies for a broader range of people.
Will the study results be meaningful to people from my background?
We are interested in groups of individuals from diverse backgrounds and populations. The disease risk assessment you will receive has been validated in people from two to four groups: Asian descent, African descent, European descent, and Hispanic and Latina/o. Our ability to predict risk may differ for people from each of these groups. For each condition, we will give you information about how well the risk estimate works overall and by group, when available. Some conditions may not have enough information to give risk for all groups. You should talk with the study staff and your doctor if you have questions about the risk results.
If you do not identify with one of the four groups, it is important to discuss this with the study staff and your doctor. Using the overall score, or results from groups you most closely identify with may help you and your doctor make informed decisions about your care.
Is there a cost to be part of this study?
No. You do not pay anything to participate in the study.
What if I no longer want to participate?
You can withdraw from this study at any time. This will not affect your future medical care.
What will be done with my information after this study?
The eMERGE study is scheduled to end in 2025. However, researchers may continue to examine de-identified information about you (information with your identity removed) after the study is over.
Who will see my risk report?
People who can already view your health record will be able to see your report. This may include health professionals such as doctors, nurses, pharmacists, and genetic counselors. This does not include insurance companies or employers.
How do you keep my information secure?
In this study, genetic information and health information about you will be shared with other eMERGE Network researchers. Importantly, identifying information like your name, address, phone numbers, or email address will be removed before it is shared. The goal of sharing information with other researchers is to have many people working together to study lots of data to make new discoveries.
We will not sell any of your information, including your genetic information. We will share your de-identified information only with approved research teams for medical research purposes.
What about my privacy?
Your privacy is very important. Study information can only be used for research and is legally protected from other uses by a federal certificate of confidentiality. This means that the information cannot be used by law enforcement or others who might want to gain access to your identifiable genetic or other information, although prevention of these uses cannot be guaranteed.
What legal protections are there for my genetic test results?
Employers and health insurance companies are prevented by law from discriminating against you based solely on genetic test results. The federal law is called the Genetic Information Non-discrimination Act (GINA). GINA does not protect active duty military, but the military has other privacy protection policies. Some states have additional protections. You should talk with your study team if you have further questions.
What about other types of insurance, like life insurance, long-term care insurance, or disability insurance?
If through this study, you learn that you have an increased risk for a condition, and then you try to get life, long-term care, or disability insurance, the cost may be higher than if you did not have these results. It might also be harder to get these types of insurance. Only Florida has a law restricting life insurers from using genetic test results, although a number have laws requiring insurers to get consent before doing genetic tests themselves.
You should talk with the study team if you have further questions.
Other information about the study and risk report
Who is in the eMERGE Network?
The eMERGE Network is a group of research studies across the United States working together to study genetics and help doctors treat and prevent some common conditions. This group is funded by the National Institutes of Health (NIH). The eMERGE network currently includes sites across the United States.
Is the eMERGE study different at different sites?
Different health centers have different policies for how tests are carried out and reports shared. However, the main parts of the study are the same at every site.
What information is used to give me a risk report?
Differences in your genes, along with your family history, and your medical history are combined to estimate your risk of getting common conditions, such as diabetes, heart disease, and cancer.
Some people have an increased risk because they have one specific change in their DNA. This is called monogenic risk: “mono” means one.
Other people have an increased risk because they have many changes in their DNA. This is called a polygenic risk: “poly” means many. The score that summarizes this risk is called a “polygenic risk score” or “PRS”:
Other factors that increase risk include family health history and your medical history.
Are there limits to the risk report?
Yes, because this is a research study, we are still learning about the conditions we are studying. We will give you the most accurate report we can based on what we know at the time we give you results. This report cannot tell you about your risk for conditions that we are not studying. This report looks at your risk of some common conditions such as diabetes, heart disease, and cancer.
• Will this report diagnose me with a condition?
No. The report is not a diagnosis but might provide information on your risk for certain conditions. Other tests may show that you already have these conditions.
• Will this report tell me if I am a carrier for a particular condition that I don’t have but could pass onto my children?
• Does this report tell me if I have a genetic condition?
No. The report can only tell whether you are at a higher risk for certain conditions we are studying that have a genetic contribution.
• If I am pregnant, will this report give me information about my baby?
Will the report for children be different from the report for adult participants?
Yes. Children will only be tested for conditions found in children. They will not be tested for conditions that happen only in adults and where there is nothing that can be done in childhood to prevent or decrease the risk of developing the condition. Likewise, adults will not be tested for conditions that more commonly happen in children.
Will my report matter for my family?
In most cases, no. The results that people will learn from this study may be important to their health, but do not provide a lot of information about the risk to other family members.
Some people may learn about a type of genetic risk that might also affect family members. If so, the study team or your doctor will be able to offer advice on how to share this information with your family members so they can make decisions about their own health.
Will the results of the study give me information about if I should or can have children?
Should I tell other health care providers about my report?
Your results will be in your health record so your providers who are part of the institution that recruited you should be able to see them. You should share your results with your providers who do not have access to the health records of the institution that recruited you. If they have questions about what the results mean, they can contact the study team.
Will I need to have the genetic test done more than once?
No. You should not need to have this test done more than once. You will need to keep track of your report in order to share it with your doctors, including those you see in other health systems. After you join the study, we will contact you to give you your report and ask you to complete surveys that ask about your results.
The information provided is only intended to be general summary information for the public. It is not intended to take the place of either the written law or regulations. It is intended to provide information to help potential study participants understand current research related to eMERGE.
The eMERGE Network strongly urges participants and potential participants to consult with a qualified health care professional for answers to personal medical questions.
When was this content last updated?
January 11, 2022