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.
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 can participate by going to the study link, 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!
