If you’re wondering about uBiome research and who can see or use your uBiome data, this page is for you.

We hope this clarifies any questions, but feel free to contact us if you have any queries or concerns. (These are uBiome’s current policies as of September 2013.)

uBiome Research Study

uBiome obtained Institutional Review Board (IRB) approval from E&I Review Services in April 2013.  An IRB is a group of scientific and community members who review research to facilitate protecting the welfare of research volunteers.  The uBiome research study has received approval which allows us to conduct research, as well as to share and publish data from those who review and sign the Informed Consent form . Please review the document carefully as it discusses our research activities and governs how and what data may be used in scientific publications and shared with scientific collaborators.

You are not required to participate in the uBiome research study in order to obtain services from uBiome.  Specifically, if you select “I DO NOT WISH TO PARTICIPATE AT THIS TIME” on the consent form, this will not affect your ability to view correlations with other participants in the uBiome Dataset.  Additionally, you can change your mind and consent to participate in our research at any time.

If you have already consented to participate in our research study and later change your mind, you may withdraw your consent by advising us of your decision.  uBiome will prevent the requested information from being used in new uBiome research occurring after 30 days from receipt of your request. Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn. Withdrawal of consent can be performed by contacting the Human Protections Administrator at privacy@uBiome.com, or by changing your consent status within the uBiome “Settings” page.

Inclusion in uBiome Dataset

(allowing you to see correlations with other users)

After accepting our Terms of Service and Privacy Policy, you may choose not to have your data included in the uBiome Dataset. If you choose to keep your data private (out of the larger uBiome Dataset), we will still provide you with the bacterial populations and raw data generated by our process. However, we will be unable to provide you with correlations to others who choose to participate in the uBiome Dataset. If you initially choose not to participate in the uBiome Dataset, you can change your mind and participate at any time. All activity on the uBiome website, whether or not you opt in to the research study, is covered by our Privacy Policy and Terms of Service.

Data Sharing

You have three options for data sharing and the choice is yours to make.  You can share your data with:

  1. Just you. After your sample is sequenced, no one will see the data but you (and uBiome). It’s yours to download and do what you want with (including share with others). You will NOT see correlations with other uBiome users
  2. You + uBiome users. You (and uBiome) see your data, and other uBiome users will see your anonymized aggregated data. You WILL see correlations with other uBiome users (and be able to download your data and share it as above).  The other users of uBiome will not be able to identify you personally from this data because your information is pooled and no identifying information is included.  Similarly, you won’t be able to identify other uBiome users.
  3. You + uBiome users + Researchers. This type of data sharing requires you to read and electronically sign an Informed Consent form.  The consent form explains the details of data sharing, as well as potential risks.  By consenting to participate in our research study you will be agreeing to share your data with selected researchers who have signed a data-sharing agreement with uBiome. As with item B above, you still get to see your data and share the aggregated, anonymized results with other uBiome users.)

If you have questions, please contact us at datapolicy@ubiome.com.

privacy policy | terms of service | research consents

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