Rights as Research Participants
The MATR holds the rights of our participants in the utmost respect and strives to ensure a pleasant experience for our twins for each and every study. We also want our twins and twin families to know what they can expect as members of the MATR. The document below, called Rights as Participants, fully explains what being part of the MATR means.
Here are a few of the measures we take to ensure the privacy of our registrants’ personal information:
- The MATR provides notice of the types of information we collect, why we collect such information, and our privacy and information safeguards, including rights of access and correction.
- The MATR obtains consent before collecting, using, or disclosing personally identifiable information about participants and prospective participants. (except as necessary to identify and recruit prospective participants)
- The MATR obtains the permission of individuals before permitting outside researchers to contact them.
- Personally identifiable information is kept in an identifiable format only as long as needed to meet the purposes for which it was collected
- The MATR restricts access to personally identifiable information, allowing only those employees who need such access in order to carry out their jobs.
- The MATR strives to maintain updated personally identifiable information about participants and their families and may use publicly available information in efforts to do so.
- The MATR uses rigorous administrative, technical, personnel, and physical measures to safeguard personally identifiable information concerning registry participants and their families.