Frequently Asked Questions
WHY DO I PROVIDE...
Why am I required to give a blood sample?
We need a blood sample to measure your level of exposure to environmental agents such as chemicals or metals, levels of hormones, vitamins and nutrients, and specific variations in genes that may be related to your risk of developing breast cancer and other diseases. We will not test for illegal drugs. Questionnaire data can give us a good picture of your lifestyle and potential exposure to different chemicals and other risk factors over your lifetime. But the most accurate picture of your actual exposures at the time you join the study is what we can measure in your blood.
It is important that we collect this sample when you first enroll in the study so that the levels of anything we measure are not changed because you have developed some new health problem.
Can I get the results of my blood test?
No. Most of the tests we will do are for research purposes only. They are not intended to be used as diagnostic tests or to make decisions about your medical care. Furthermore, we will not do all tests for all participants in the study and it may be many years before we test your blood. Some of the tests are very expensive and it is efficient to do them only on blood samples from women who develop breast cancer and a small percentage of the women who don’t. In order to get valid answers, for many tests, we plan to wait until women in the study have been followed for at least 5 years.
Can I get any results from the study?
We will let you know what we learn by combining the results of tests from many women. We hope that our analyses will provide information that can be used to help women prevent breast cancer and we will make sure to share that information with you.
If, in the course of testing blood samples from many women in the study, we learn something that, in our judgment, is especially important to tell individual participants, we will work with our Institutional Review Board (the committee responsible for overseeing the quality of our research and the safety of research participants) to determine the best way to inform participants.
On a regular basis, we will send you newsletters with highlights of general study results. Results of the study will also be published in scientific journals, and we will post these on our web site, www.sisterstudy.org
Why collect a blood sample from everyone when only some women will develop breast cancer?
It is important to collect the sample when you are not sick. Many conditions such as breast cancer will cause the blood measurements to change. For example, the disease or the treatments might change your hormone levels. If you lose or gain weight, the levels of some chemicals or hormones might change.
Why do you collect blood from everyone if you don't plan to use it?
We cannot predict which women will develop breast cancer or other diseases. The only way to make sure that we have blood samples that are taken BEFORE women become ill is to collect the blood from everyone at the start of the study. Many of the tests we want to do (for example, to measure levels of certain chemicals in the blood) are very expensive and we cannot afford to do them on all samples. It is very efficient to measure these chemicals in the blood of all women who develop breast cancer but in only some of those who do not develop breast cancer.
Why don't you do all of the blood tests at the start of the study?
Because this is a long-term study, we don't know which measures will be most important in 5 or 10 years. One advantage of our study is that we will have the stored blood samples to take advantage of future advances in science and technology and will be able to do the tests that are most likely to give us new information about breast cancer.
Will my blood be used for genetic (DNA) testing?
Most participants’ blood samples will be used for genetic (DNA) testing. Although we may be testing for genes that directly influence breast cancer risk (e.g. known breast cancer genes), most of the tests will focus on genes that influence risk only indirectly, for example, by enhancing risk related to diet or environmental exposures. It is important that you know that any analyses using your blood samples will NEVER include information that would identify you personally. Also, it is important that you know you will not get any results of the tests that may be performed on your samples. If you have specific concerns about your health, you should consult with your own doctor to find out about tests that are available and appropriate for you.
Why do I have to provide a urine sample?
The urine sample will be used to measure some hormones that are not easy or accurate to measure in blood. The urine samples will also be used to measure some chemicals to which you may have been exposed. We will not test for illegal drugs. The urine sample is easy to collect. This is something you can do at home, first thing in the morning on the day of the examiner visit.
Why do I have to provide toenail clippings?
Toenails are valuable to researchers because the measurements from toenails reflect exposures over a longer time period than either blood or urine. Also, there are some things like metals that we can easily measure in toenails. Practically speaking, toenail clippings are usually easy to collect and store. We will not test for illegal drugs.
Why do I have to provide a house dust sample?
House dust is valuable to researchers because the measurements from house dust will tell us about the chemicals you may breathe or ingest in your living environment. There are things like pesticides and allergy-provoking substances that we can measure in house dust.
Why are you asking for my Social Security number?
Social Security numbers are very important in a long-term follow-up study. We will use your Social Security number to link to national databases to obtain necessary medical and vital status information and to help us locate you if we lose contact. We recognize that your Social Security number is private and many people are worried about sharing this number. We will not share this number with anyone and we will make sure that only key study personnel have access to your Social Security number, and then only for purposes directly related to the Sister Study.
Why do I have to provide the names and telephone numbers of other contact people?
Since this is such a long-term study, participants may change their addresses and forget to tell us. We want to make sure we will be able to contact you in the future. If we have trouble finding you, we will telephone the contacts you’ve listed to find out where we can reach you. Please select people who will always know where you are in case you move. It is best to give the names of people who are about your age or younger.
Will I have to provide any medical records?
It depends. If you are diagnosed with breast cancer or other major illnesses while you are still participating in the study, we will ask you to give us written permission to seek more information about your diagnosis and treatment from your doctor and from your medical record. At that time, you can agree to give us permission or not.
Why do you need details from my medical records?
Risk factors may differ for breast cancer with specific features or even by tumor location in the breast. The best source of accurate information on specific breast cancer features is the medical record.