Answer survey questions and then return the “spit kit” that we will mail to you. That’s it. If you are interested, you may take additional health-related surveys, and you may opt to allow access to part of your electronic health records, both of which would enhance the study.
No. The study will not be able to return any results to you other than information about your genetic ancestry.
Our study is a research study, not a diagnostic test. Testing is designed to give the results of the test back to you, while research studies use the data for research to gain broader knowledge but, for legal reasons, typically do not return the results back to the participants. Our research study does not return study results to the participants.
To learn whether you carry specific mutations known to impact your risk of breast cancer, our recommendation is to meet with a Genetic Counselor, who is a medical professional who can order the appropriate tests and can return your results and discuss them with you. You can locate a genetic counselor near you here: https://findageneticcounselor.nsgc.org/. Study participants near New Brunswick, NJ, can contact the CINJ LIFE Center https://cinj.org/patient-care/adult/GeneticCounseling. Direct-to-consumer companies are also a possibility; try searching for the phrase “clinical-grade genetic testing services.”
Almost none of the researchers will have access to information that identifies you such as your name and address. Instead, they will only have access to data that replaces that information with random codes. Only one researcher, at Rutgers University, will have access to your contact information. That data is stored under encryption and best-practices security protocols. No one at Regeneron or any other institution will have access to that information.
There is a lot of genetic variation among people, and some of that variation leads to slightly different versions of the proteins that our bodies make. Sometimes those different protein versions increase or decrease the risk of disease, such as breast cancer. Knowledge of such different protein versions, and their effects, can be used to target drugs that mimic the disease-lowering versions of those proteins.
The Regeneron Genetics Center has a long-standing interest in research to better understand the genetic contributors to disease, with the ultimate goal of developing new or improved drugs or other treatments. Regeneron often partners with academic investigators to help achieve this goal. The researchers at Rutgers have worked on human genetics research for decades and know how long it can take for academic work to lead to beneficial drugs, treatments, and therapies. By working directly with Regeneron, they hope to shorten that time dramatically.
No, there is no financial benefit to participating in this study, regardless of its success.
Your DNA in the saliva will be sequenced and the DNA sequence, along with your survey answers (and electronic health data, if you opt in for that), will be included in research studies to better understand the genetic contributions to the risk of developing breast cancer.
Our study uses a technology (called Whole Exome Sequencing) that produces very detailed genetic information about the part of the genome that provides instructions for proteins; proteins are the building blocks of cells. Most direct-to-consumer genetics companies use a less detailed technology known as array-based genotyping. Because our sequencing is more fine-grained (you can think of it as a telephoto picture), it can detect variants that are quite uncommon in the population.
Although we won’t be returning estimates of participants’ risk of diseases, we will be returning detailed ancestry information. We just won’t be charging for it.
No. This study will do much more detailed genotyping than direct-to-consumer genetics companies do. Even if you have already participated in a genetics study or a consumer genetics site, we welcome you to also participate in this study.
No. Anyone 18 or older living in the US can participate by going to the sign up link above, including both males and females and people who have had breast or other cancer and people who have never had cancer. The more diversity, the better for our study – we need people from all walks of life! Encourage your friends and family members to sign up! They can use this link: https://bcstudy.rugcc.org/referral
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To ensure a high quality saliva sample, please do not eat, drink, smoke or vape, chew gum, or use mouthwash for at least 30 minutes before providing your saliva.
If you are sick with an upper-respiratory infection (e.g. coughing, post-nasal drip, runny nose), please wait until 1 week after your symptoms have cleared before providing your saliva sample.
Your ancestry journey starts when you request your saliva kit. The sooner you return it to us, the sooner you can receive your ancestry data. Be sure to follow the instructions when providing your saliva sample.
Processing times vary, typically taking between 3-6 months. Ancestry is determined in batches, so the sooner we sign up more participants, the sooner your ancestry results become available.
