Privacy and Confidentiality

All personal information is kept private by various measures: Personal identifiers have been removed from samples and questionnaires, and kept in separate files stored in a secure location. All of the staff working on the MWS are bound by signed confidentiality forms and have undergone training and certification on informed consent. Questionnaires and samples have been assigned a unique numerical ID. We do not share any personal information with anyone outside of the study, like insurance companies or employers.

HOW THE MARIN WOMEN'S STUDY WORKS

  1. The Marin Women’s Study questionnaire was distributed at mammography facilities to women receiving a screening or diagnostic mammogram.
  2. The questionnaire data, biospecimen, and mammogram data have been assigned a unique study ID number with a barcode.
  3. The study ID number is the only link to each piece of data.
  4. All personal identification data is in a separate, encrypted database to ensure confidentiality.
  5. The study database is on a password-protected computer in a locked room with restricted access. No unauthorized individuals have access to the office or the data.
  6. Biospecimens are analyzed by scientists at the Buck Institute. Saliva samples never contain any personal identifiers. The samples are only labeled with a barcode.

We understand concerns about the privacy of health information, and here at the County Department of Health and Human Services, we take confidentiality very seriously and work with Human Subjects protection boards to ensure procedures are in place to protect the confidentiality of MWS participants.