Judith Zimmerman and Ronald Mortensen: Lawmakers shouldn’t put research above Utahns rights to privacy

(Al Hartmann | The Salt Lake Tribune) An individual exam room in a Utah clinic.

Most Utah residents, including medical providers, likely don’t know that Utah code allows governmental entities to collect and share our private and/or controlled medical records for research purposes without our informed consent.

Thus, massive amounts of our identifiable and de-identified medical information can and are being shared by the government for “research purposes” without notifying us or gaining our consent. This Utah law needs to be changed. Elected officials must stop putting the “value of the research” above our individual rights of privacy.

For many, the right of privacy is fundamental to their understanding of freedom, but nowhere does the U.S. Constitution mention it. Fortunately, the framers of the Bill of Rights added protections for many aspects of our privacy. These framers were specifically concerned about the privacy of beliefs (First Amendment), privacy of the person and possessions as against reasonable searches (Fourth Amendment), and the Fifth Amendment, which provides protection for the privacy of personal information. With the advent and continuing development of artificial intelligence (AI), our medical privacy is more at risk than ever — a risk far greater than the framers of the Bill of Rights could ever have imagined.

Privacy laws have not kept up with technological changes. Utah has already enacted legislative loopholes that allow the sharing of our identifiable and de-identified electronic medical records without our consent and knowledge.

For example, a top Utah Department of Health official stated in an interview with a Salt Lake City Police Department detective (GO# SL 2022-37775) that he often would sign agreements with researchers. The health official went on to say, “that everything is shared including all of the identifiers of each individual listed...” Even when records are de-identified, AI makes it possible to identify us from the data elements that are shared. Therefore, the legislation that permits the sharing of our information is contrary to our understanding of the freedoms we hold dear and represents government overreach.

Certainly, we value research, but should it be at the cost of our personal medical privacy? We would argue that we should be given the opportunity to give our informed consent for participation in each research proposal where our data is requested, transferred, and/or utilized. In other words, we should have the freedom to choose whether our most private and sensitive information is disclosed to researchers and to be informed how our participation in the research may impact each of us and potentially our children and other family members.

We understand how lucrative our identifiable medical data is to researchers. We also understand how valuable insights and innovation can come from the use of our medical data. We would suggest, however, that until government agencies can guarantee us that they can de-identify datasets and create de-identified aggregate datasets that cannot be compromised by AI, the government has no right to share our most sensitive medical information for any purpose without first obtaining our written consent.

This informed consent process must be a requirement for researchers’ access to our medical records, especially since no one can absolutely guarantee us the anonymity of our data. Informed consent is one of the founding principles of research ethics. With consent, we can agree to participate in research voluntarily, with full information about what it means for us to take part, and with the opportunity to ask questions. We also will have a mechanism to hold researchers accountable for any harm and failure to follow study protocols.

Please contact your state representatives and legislators as well as Gov. Spencer Cox and tell them to stop sharing our and our children’s medical records without our formal, written consent. After all, privacy is fundamental to maintaining our health freedom. Utah government should respect us enough to at least obtain our consent before sharing our medical records far-and-wide.

Judith Pinborough-Zimmerman

Judith Pinborough Zimmerman, Ph.D. was an assistant research professor, University of Utah, 2005-2013, program manager and speech pathologist, Utah Department of Health, 1978-2005.

Ronald Mortensen

Ronald Mortensen, Ph.D. has written extensively on privacy and advocated for the state to stop selling and sharing our information without our consent.