4YouandMe's Strategy to Protect You as a Research Participant in Light of the recent SCOTUS ruling
We understand that many women have concerns over the privacy of their personal health information that could be accessed by others and used against them, and that your participation in a pregnancy research study might alter this risk.
While the BUMP study is an IRB approved, HIPAA compliant research study that maintains strict confidentiality of your personal health information, we appreciate that there are still unforeseen risks that these safeguards may not be able to protect in the event that a state, or organization requests access to sensitive information about miscarriages or terminations. Therefore, we are taking a proactive strategy to reduce the risk to our participants by initiating efforts to remove any study questions or fields from the study app, that we ask you over the phone and that we pull from your medical records that could ever be used against you. These include any questions and information relating to your past pregnancies, or information about your current pregnancy relating to miscarriages or terminations. In addition to removing these study questions and fields, we plan to systematically delete any data that has already been collected from BUMP participants that falls under the categories listed above.
We hope that this strategy gives some comfort to those considering participating in the BUMP study, and for existing participants and in ensuring your safety as a woman in these unpredictable times.
The 4YouandMe Team