Ultimate consent form¶
The following consent form has been put together, by merging best parts of existing consent forms and consulting with experts in research ethics.
English¶
Single access type version (all data shared publicly; recommended)¶
Version: OBC-ULT 1.0.1
The data and samples from this study might be used for other, future research projects in addition to the study you are currently participating in. Those future projects can focus on any topic that might be unrelated to the goals of this study. We will give access to the data we are collecting, including the imaging data, to the general public via the Internet and a fully open database.
The data we share with the general public will not have your name on it, only a code number, so people will not know your name or which data are yours. In addition, we will not share any other information that we think might help people who know you guess which data are yours.
If you change your mind and withdraw your consent to participate in this study (you can call <PI name> at <phone number> to do this), we will not collect any additional data about you. We will delete your data if you withdraw before it was deposited in the database. However, any data and research results already shared with other investigators or the general public cannot be destroyed, withdrawn or recalled.
By agreeing to participate, you will be making a free and generous gift for research that might help others. It is possible that some of the research conducted using your information eventually could lead to the development of new methods for studying the brain, new diagnostic tests, new drugs or other commercial products. Should this occur, there is no plan to provide you with any part of the profits generated from such products and you will not have any ownership rights in the products.
To the best of our knowledge, the data we release to the general public will not contain information that can directly identify you. The data will not have your name on it, only a code number, so people will not know your name or which data are yours. In addition, the data will not include data that we think might help people who know you guess which data are yours, such as your facial features or the date that you participated. If we write a report or article about this study or share the study data set with others, we will do so in such a way that you cannot be directly identified. However, by using additional data linked to your name (for example brain scans obtained from your medical records) one could potentially associate your imaging or other information in our database back to you. In addition a security breach (break in or cyber attack) might lead to someone being able to link you to your data. This risk is very low because your data are stored in a secure database, and the information about your identity is stored separately from the data themselves, linked only through a code.
We will keep the private portion (name, contact information etc.) of your data in a secure location for at least <x> years. This way if one of the researchers that obtained the data from us will find something in your brain scans that would have a diagnostic value we will be able to contact you. After this period of time we will destroy this information to protect your privacy.
Letting us use and share your data is voluntary. However, you must be willing to share your data in this way in order to participate in this study. If you are not willing, you cannot participate in this study.
By signing below, you agree to provide your data for future research. You agree that these may be shared with other investigators at other institutions from around the world. The details, results, and implications of these studies are unknown.
Two access types version (some data shared publicly, more data shared to approved researchers)¶
Version: OBC-ULT-2T 1.0.1
The data and samples from this study might be used for other, future research projects in addition to the study you are currently participating in. Those future projects can focus on any topic and might be unrelated to the goals of this study. We will give access to some of the data, including the imaging data, to the general public via the Internet and a fully open database. The data we will share publicly are limited to <explain what will you share publicly>. Additionally we will make all of our data available to other investigators through a controlled access database. To minimize risks to your privacy, a committee of experts will carefully review every data request from other scientists before allowing them to use this controlled access database, in order to make sure they can also protect your personal information. These other investigators may be at <your institution> or at other research centers (academic or commercial) around the world.
If you change your mind and withdraw your consent to participate in this study (you can call <PI name> at <phone number> to do this), we will not collect any additional data about you. We will delete your data if you withdraw before it was deposited in the database. However, any data and research results already shared with other investigators or the general public cannot be destroyed, withdrawn or recalled.
By agreeing to participate, you will be making a free and generous gift for research that might help others. It is possible that some of the research conducted using your information eventually could lead to the development of new methods for studying the brain, new diagnostic tests, new drugs or other commercial products. Should this occur, there is no plan to provide you with any part of the profits generated from such products and you will not have any ownership rights in the products.
To the best of our knowledge, the data we release to other investigators or the general public will not contain information that can directly identify you. The data we share with other scientists or the general public will not have your name on it, only a code number, so people will not know your name or which data are yours. In addition, the data made available to members of the general public will not include data that we think might help people who know you guess which data are yours, such as your facial features or the date that you participated. If we write a report or article about this study or share the study data set with others, we will do so in such a way that you cannot be directly identified. However, by using additional data linked to your name (for example brain scans obtained from your medical records) one could potentially link your imaging or other information in our database back to you. In addition a security breach (break in or cyber attack) might lead to someone being able to link you to your data. This risk is very low because your data are stored in a secure database, and the information about your identity is stored separately from the data themselves, linked only through a code.
We will keep the private portion (name, contact information etc.) of your data in a secure location for at least <x> years. This way if one of the researchers that obtained the data from us will find something in your brain scans that would have a diagnostic value we will be able to contact you. After this period of time we will destroy this information to protect your privacy.
Letting us use and share your data is voluntary. However, you must be willing to share your data in this way in order to participate in this study. If you are not willing, you cannot participate in this study.
By signing below, you agree to provide your data for future research. You agree that these may be shared with other authorized investigators at other institutions from around the world. The details, results, and implications of these studies are unknown.