PRIVACY AND CONFIDENTIALITY

Your personal information will be kept private by various measures: Any personal identifiers will be removed from your samples and questionnaires, and kept in separate files accessible only to the Chief Epidemiologist. All of the staff working on the MWS are bound by signed confidentiality forms and have undergone training and certification on informed consent. When we collect your questionnaire and samples, we will assign a numerical ID to your data. Your identity will essentially become a number, and your data will be anonymous. Your privacy will be protected even after the study ends. We will not share any personal information with anyone outside of the study, like insurance companies or employers. Your blood and saliva samples will not be used for commercial purposes.

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. Currently women receiving diagnostic mammograms are invited to join the study. The completed questionnaire is put into the provided envelope, sealed and either dropped into the MWS locked drop box at the facility or sent through U.S. mail, postage paid.

2. The questionnaires will be picked up and hand carried by authorized MWS research staff from the facility to Marin County Department of Health and Human Services (MCDHHS). If you mailed the questionnaire, it will go directly to MCDHHS.

3. When MCDHHS receives the questionnaire, the chief epidemiologist will remove all of the personal identifiers (such as name, phone number and address) from the questionnaire. We will then scan the anonymous, de-identified data into the study database.

4. The questionnaire data, personal identifiers, biospecimen, and mammogram data will all be assigned a unique study ID number with a barcode.

5. The study ID number will be the only link to each piece of data.

6. All personal identification data will be held in a separate, encrypted database to ensure confidentiality. The hardcopies of the questionnaire and personal identification page will be shredded after the data is entered.

7. The study database is on a password-protected computer in a locked room with restricted access. No unauthorized individuals (including janitorial staff) have access the office.

8. If you also choose to donate saliva (saliva kit will be mailed to you after the questionnaire is received in the office and your consent to provide saliva is processed), the samples will be stored in locked freezers with restricted access at the Buck Institute for Age Research. If at any time during or after the study you decide that you no longer want your samples to be a part of our research, you may withdraw them.

9. The biospecimens will then be analyzed by scientists at the Buck Institute. Your samples will never contain any personal identifiers. The samples are only labeled with a barcode.

10. Once all of the data is collected and entered into the study database, our research team will begin with the analysis.

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.

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