Tracking US universities' post-Dobbs research privacy guarantees

UPDATE 9 September 2022: Good news! The "federal, state, or local laws" exemption is clarified in the "When can Information or Biospecimens Protected by a Certificate of Confidentiality be Disclosed?" section of the What is a Certificate of Confidentiality? | grants.nih.gov site. 

This post is now less relevant, so I put it below the "jump".

Many types of human-subjects research collects information related to pregnancy (e.g., date of last menstrual cycle for a circadian rhythm study; pregnancy test before imaging; questionnaires during high-risk pregnancies). After Dobbs v. Jackson Women's Health Organization, this data could expose participants to legal risk if they were charged with something like obtaining an abortion or endangering a pregnancy.

NIH Certificates of Confidentiality protect participants' information from disclosure, but have exceptions in "limited circumstances":

*Disclosure of identifiable, sensitive information (i.e., information, physical documents, or biospecimens) protected by a Certificate of Confidentiality must be done when such disclosure is required by other applicable Federal, State, or local laws. [emphasis in original]

The question then, is if abortion-related lawsuits would fall under the Certificate of Confidentiality's limited circumstances; could researchers be required to disclose data? If so, participants must be informed of the risk during consent, and researchers must consider whether some data can be ethically collected.

These issues apply to all US researchers, but I am not aware of any official NIH-level guidance, nor universities that have issued a formal opinion. Many universities want to avoid abortion-related publicity and so are not making public statements, but at the same time are trying to quietly reassure faculty/staff/students that medical treatment and privacy are the same as they were pre-Dobbs. 

I believe that this public/private message disconnect can and should not continue indefinitely, and that proactive privacy guarantees are less potentially harmful to participants than a lawsuit or court-forced data release. My motivation for this page is that openness is generally good, and since universities and other institutions tend to adopt each other's policies, if a few take action, others will likely follow.

This page is meant to track what researchers are told about the privacy of their pregnancy-related data. Have you asked whether your university would require release of data in the case of a abortion-related lawsuit? If so, what was the response? Was the response formal and cite-able, such as a memo, HRPO or IRB guidance? 

I started the table with my own understanding of the situation at my university. Please send me (via email, twitter, or a comment on this post) what is happening at your institution. If there was a formal communication, please include its URL. Notes such as "asked HRPO 15 July, no response yet" are also welcome. I promise not to include your name/contact info unless you explicitly request otherwise (blog comments can be made anonymously).

Thank You!

State	Institution	Date	Formal?	Status/Notes
MO	Washington University in St. Louis	2 Aug 2022	no	verbal communication that pregnancy-related research records will not be released in an abortion lawsuit, regardless of whether the NIH Certificate of Confidentiality is sufficient protection.
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