Personal Information will be collected from this survey.
From this study, the following data will be collected:
- the answers to the survey.
- your informed consent, that you have read and agree to all study details.
- any feedback and opinions that you provide in connection with the study (Study Feedback).
You will only be identified in any Study Feedback, and throughout evaluation of that Study Feedback, by the volunteer code allocated to you in respect of the study.
Who can see or use my information? How will my personal information be protected?
Your test results will be analysed by the study team for the study purpose and they may be used in the future to answer other research questions. Information collected in this study may also be shared with other researchers. Every attempt will be made by the investigators to maintain all information collected in this study strictly confidential, except as may be required by court order or by law. The following people may have access your personal information:
- the World Taste and Smell Day Association Board members and affiliates.
- the Monell Chemical Senses Center Human Subject Committee.
- Researchers, analysts, and programmers from HCD Research who will perform and oversee the study.
If any publication or presentation results from this research, or if the information collected in this study is shared with other researchers, you will not be identified by name.
At the conclusion of the study, the data will be used for analysis and manuscript preparation by the research team at the Monell Center. No publications or presentations will identify the participants except in terms of age and gender. At the conclusion of the analysis and publication stage, the paper data will be archived along with the computer files and maintained for a period of 7 years in accordance with National Institutes of Health (NIH) criteria. After that time, the data will be destroyed.
Consent to Collect, Use, Store, and Process Personal Information under European Union privacy rules (GDPR – General Data Protection Regulations)
If you are in the European Union, to the extent possible* all personal research information that you provide in connection with the research study will be collected, used, stored, and processed in accordance with the provisions of Regulation (EU) 2016/679 (“Regulation on the protection of natural persons with regard to the processing of personal data and on the free movement of such data”), as well as all other applicable laws. These laws and regulations, depending on the type of information involved, provide you certain rights with regard to your personal information. You may elect to withdraw your consent to the collection, use, storing, and processing of your personal research information prior to completing the research procedures described in this Consent for Research. If you decide to withdraw your consent during the study, to the extent required by law and we are able to identify you from the information retained as part of this study, any personal research information you have already provided will be destroyed or deleted, and will no longer be collected, used, stored, or processed. You may also withdraw your consent to the use, storing, and processing of your personal research information from the research study after your participation in the study has ended. To the extent required by law, if you withdraw your consent to the use, storing, and processing of your personal research information after the study has been completed your personal research information will be destroyed or deleted, and will no longer be collected, used, stored, or processed.
No other study personnel will have access to your identity in data recorded as part of this study. Information that is disclosed publicly (e.g. reports, presentations or publications) concerning this study will not contain your identity and will not contain information that will allow your identity to be revealed.
*Note: On July 16, 2020, the Court of Justice of the European Union (CJEU) published its judgment in the Data Protection Commissioner v. Facebook Ireland Limited, Maximillian Schrems (C-311/18) (the Schrems II case). In its judgment, the CJEU declared the EU-US Privacy Shield – one of the primary data transfer mechanisms for the safe and free flow of data between EU and US organizations – invalid, therefore invalidating the previous European Union adequacy decision of the EU-US Privacy Shield.