You will be paid $20.00 for participating in the EPR.
There will be no cost to you for any part of this study.
Your participation in the EPR is completely voluntary. You may withdraw from the EPR at any time and for any reason without affecting your current or future participation in other NIEHS studies. To withdraw, contact the EPR at 1-866-809-1261 or firstname.lastname@example.org. Upon withdrawal, EPR staff will ensure you are not contacted regarding future follow-up studies and will destroy your original blood/DNA sample(s), unless you choose to allow continued use of your original sample(s) by researchers. If your DNA has already been analyzed for certain DNA differences and the data have been statistically analyzed, we will not be able to remove the data from our databases, but we will not give your name and contact information to other scientists for future follow-up studies. If your name and contact information have already been provided to follow-up study researchers/staff, we will contact those individuals and ask that your name be removed from consideration.
You have the right to ask, and have answered, any questions you may have about this research. If you have questions, you should call or email Jamie Glover (919-287-4382; email@example.com)
Enrollment into the registry is expected to last indefinitely. There is no limit to the length of time we will keep your biological and environmental samples and information. We will keep them as long as they are useful, unless you request to be withdrawn from the registry and your samples destroyed or we close the Environmental Polymorphism Registry. During this time, you will be contacted once a year (by email, mail, or phone) and asked to update your contact information. Also during this time, you might be contacted and asked to participate in a future follow-up study as described above. These future studies might require you to fill out a questionnaire or take a telephone survey, or may require you to have a physical examination or laboratory procedure, including blood tests.
No. Future studies are separate from the EPR, and are completely voluntary. If you are asked to participate in a follow-up study and you agree to do so, you will be asked to sign a new consent form for the study at that time.
The only physical risk associated with this study is some bruising, swelling or redness that might occur at the venipuncture (blood draw) site. There is also some risk associated with maintaining your privacy and confidentiality. We will make every effort to keep your participation and study results confidential. For this study, we have obtained a Certificate of Confidentiality which legally protects your personal information and study data from third parties, e.g. insurance companies, employers, and others.
You will not benefit personally by joining the EPR. However, you may be helping scientists discover differences in our genetic material that make people more or less sensitive to environmental factors.
No, you will not receive any results from initial DNA testing. When your blood samples are tested for genetic changes, this testing is conducted in a blinded manner, meaning they are tested anonymously. Scientists do not know your identity when they screen your samples, and will not provide you with any results. However, if your sample is unblinded (de-coded) so a researcher can ask you to participate in a follow-up study, that researcher will explain why you have been selected, and will explain any results of your genetic testing that are relevant to that study. All results generated from the EPR are strictly for research purposes only and cannot be used to diagnose or predict a condition or disease.
Creation of the EPR has been reviewed and approved by the Institutional Review Board (IRB) at the National Human Genome Research Institute, Bethesda, MD. If you have any questions or concerns regarding your rights as a research subject, you can contact Jamie Glover (919-287-4382; firstname.lastname@example.org)