Abstract
Several years ago, we set out to conduct the most extensive population-based study of severe postpartum depression in the United States. By linking various health and population databases collected in the State of New York, we had two objectives. First, determine who was most vulnerable to experiencing postpartum depression. Second, to explore the consequences of postpartum depression on the offspring. Because depressed parents have difficulty caring for their newborns, the second objective was designed to begin identifying any potential health consequences to the newborn associated with the gestational parent's depression diagnosis. For example, were these infants more likely to get injured or die from accidents, did they suffer increased incidental health issues such as ear or respiratory infections, or did they have growth and development problems?
Because estimates suggest postpartum depression occurs in 3%–19% of the population, thereby potentially impacting up to 520,000 patients annually in the United States, the findings from such a large-scale exploration would be of considerable public health importance. Unfortunately, despite conducting this study in partnership with the United States National Institutes of Health, the State of New York would not provide us permission to link the gestational parent's health information with their offspring. Without this link, it would be impossible to determine which of the newborns were born to individuals who had been diagnosed with postpartum depression. It was not that this merging was impossible. Indeed, given what we had already accomplished, it would have been relatively easy. Instead, it was prohibited.
To understand why, it is helpful to understand the importance of the Health Insurance Portability and Accountability Act (HIPAA). HIPAA and its related privacy rules require medical providers to apply appropriate safeguards to protect the privacy of protected health information. Given the scope of the project and because the information we were working with had been de-identified, there was no ability to trace any specific piece of data to a particular individual, potentially compromising their right to privacy. However, in attempting to link the gestational parent's health information with their offspring's health data it might have been possible, although challenging, to identify the parent or child. For individuals with medical histories that if disclosed might expose them to physical, psychological, or economic harm, the State of New York rightly determined the merits and importance of our project did not outweigh the potential risks to participants, even if unlikely.
More recently, with the implementation of the “Health Information Technology for Economic and Clinical Health Act,” health care delivery has undergone a digital evolution with the almost universal implementation of electronic medical records. Once maintained in paper charts by each individual practitioner, multiple doctors' notes can now be entered immediately into a single permanent electronic document specific to each patient. For example, in child delivery, when the gestational parent enters the hospital all their previous health information is immediately available to the attending medical providers and any new health information, and any care provided can be entered.
Once the infant is born, a new medical health record specific to the infant is created. Along with specifics about the infant's health, this record is instantly autopopulated with a considerable amount of health data belonging to the gestational parent, including information such as syphilis, HIV, and hepatitis status, previous pregnancies, psychiatric history, and any current medical or pharmacological treatments that may cause complications, such as withdrawal, in the newborn. Notably, no private, previously undisclosed health information from the non-gestational parent is populated into the infant's medical record.
The Problem
Among the many facets of the recently established “21st Century Cures Act” is a provision to ensure an individual's access to their medical records. This federal legislation now makes it punishable for health care providers and institutions to impede patient access to their personal health care information or face significant and potentially catastrophic fines. The process of supplying this information is primarily managed through information technology applications that may be installed on the individual's electronic devices such as a mobile phone or accessed via the information distributor's webpage. In the case of a newborn, both parents are provided access to the newborn's medical record.
At no time in a birthing individual's natural lifetime are they at greater physical and psychological risk than in the period during pregnancy and immediately after delivery. More so, at a time when reproductive and medical liberties appear to be systemically trampled, contradicting legislation may now be placing new mothers in additional harm's way by unintentionally disclosing private health information to a third party—the nongestational parent. This is neither insignificant nor is it hyperbole.
The leading cause of death among pregnant and postpartum women in the United States is not diabetes, heart disease, or infection—it is murder, and stories such as Cicely Bolden, who was killed after her HIV status was disclosed to her sexual partner are not uncommon. Indeed, homicide rates are 16% higher for pregnant and postpartum women compared with their peers of similar reproductive age. Furthermore, the increased possibility of “honor killings,” which occurs with shocking regularity in certain parts of the Middle East and South Asia, should not be overlooked in respect to the systematic disclosure of the gestational parent's private health information.
Health care institutions and individual providers are now caught between two important, but contradicting, pieces of legislation, one of which may place a vulnerable population at additional risk. Notably, the 21st Century Cures Act permits the “blocking” of health information on a “case-by-case basis” when doing so could prevent harm. However, in a large-scale medical center where thousands of deliveries occur annually, restricting specific information on a patient-by-patient basis is not practical. We propose that a larger scale workaround in the form of a legislative amendment is the only reasonable solution. However, for the time being, given that potentially private health information from the gestational parent is included in the newborns record, until this guidance is provided, access to a newborn's medical information should be universally restricted to the gestational parent and instead only made available to third parties on a case-by-case basis.