We take the privacy of our participants very seriously. All personally identifiable information we collect is protected to the maximum extent allowable by law and is only used to facilitate research.
I. Data Collection and Consent
Twins and twin families make the decision whether or not to share their information with the MSUTR. If information is provided, twins and twin families decide how much information to share and of what type. Contact information obtained from participants or potential participants in our studies will only be used to follow up regarding study participation, to send information regarding possible studies of interest, and to send our newsletter. Any study data to be used for analysis has personally identifiable information (e.g., names, addresses) removed.
All of our studies involve a consent process before participation begins. Typically, this is done using a written document that outlines study procedures, describes any risks, benefits, and compensation involved, and includes instructions on how to voice comments or concerns regarding the research. Before participation may begin, informed consent to participate must be obtained from adult twins (or from the parent(s) of minor twins, if twins are younger than 18 years). If the twins are under 18, informed assent must be obtained from the twins as well. Please note, even if consent is given, participants may withdraw this consent at any time and remove themselves from the study.
II. Data Storage and Access
Only trained research staff will interact with participants’ data. The training our staff members receive includes courses on the protection of human participants in research, including procedures to protect privacy and confidentiality.
Research files are stored in locked filing cabinets in locked offices that are only accessible to staff involved in the research project. All data are stored using unique identification numbers (ID numbers), with personally identifiable information removed and stored separately. Any electronic files containing personally identifiable information are password-protected and are only accessible by project staff members using our secure research server, which is also password-protected.
Some of our studies use an online data collection system. This system is also password-protected, and data from this system can only be accessed with an administrator account. Only senior project staff, for example, the project investigators, project coordinators, and data managers, have access to an administrator account.
Participants may request that any or all of their data be destroyed at any time. This request can be made using the MSUTR contact information provided on the Contact Us page. The decision to have your information destroyed will not result in any penalty or negative consequence. All rights and benefits of a participant will still apply. Please note, however, that data that has already been analyzed cannot be destroyed.
III. Data Sharing
Participants are not identified in any reports about the registry or publication of research results. Only composite, de-identified data is used for reporting and publication.
Participants’ privacy will be protected to the maximum extent allowable by law. However, there are two instances in which we may be required to share information provided by participants:
- The Michigan State University Institutional Review Board may have access to the data you provide in order to ensure the well-being of participants and compliance with approved study procedure.
- If we obtain information on child abuse or neglect or information on immediate physical threats to participants themselves or others, we are required by law to report such concerns to the appropriate authorities.
Apart from the required instances described above, there are two other types of data sharing that may occur to facilitate future research efforts:
- Data collected through participation in our studies may be shared for research purposes with other researchers, at MSU or other institutions. However, these outside researchers will not be given access to participants’ names, addresses, or any other identifying information. Data files used by outside researchers will identify participants by ID number only.
- The MSUTR collaborates with the Michigan Department of Health and Human Services (MDHHS) to locate and recruit twin families. If you indicate in the course of study participation that you are interested in learning about future twin study opportunities at MSU, the MDHHS may send you information about studies on particular topics for which you may be eligible. However, your questionnaire responses are kept at MSU and are not shared with the MDHHS, except as may be necessary to send you materials on future studies for which you may be eligible. For example, if you indicate on the questionnaire that you or your children have asthma, we may include your family’s ID number on a list of participants sent to the MDHHS to be invited to participate in a follow-up study on asthma. However, you would be under no obligation to participate in this follow-up study.
Mailing addresses provided to the MSUTR may also be shared with the MDHHS; however, any addresses given to the MDHHS will only be used to facilitate MSUTR mailings and will not be shared for any other purpose. Requests to be removed from our mailing list may be made at any time via e-mail or phone.
IV. Rights of Participants
- Participants have the right to receive a full explanation of the study and its procedures in advance of their participation.
- Participants have the right to ask questions and voice concerns at any time.
- Participants have the right to privacy and confidentiality.
- Participants have the right to withdraw from the study at any time and to request the destruction of their data.