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Families seeking psychiatric records of long-dead ancestors say the ability to trace family mental-health histories is shaped largely by state-by-state privacy rules—and that those rules can be especially restrictive when the people involved have been dead for decades. In New York, the fight has been personal for relatives trying to understand why an institutionalized ancestor was confined and whether later generations’ depression and other conditions might connect to family history.
Debby Hannigan, a great grandniece of Breta Meria Conole, said she spent years trying to access Conole’s medical records. Hannigan wrote to the state of New York twice, and in the second request she included a note from her daughter’s therapist saying the details would help “to know their family medical history better,” but Hannigan said both times she was turned away.
Advocates say their efforts are driven by what records can contain—staff notes that describe symptoms and detailed treatment-era documentation, including photographs and other materials. Dr. Laurence Guttmacher, a former clinical director of the Rochester Psychiatric Center, said some facilities kept an “incredibly rich trove of records,” even as other documents were damaged, destroyed or lost over time and surviving materials were not always well organized.
As families look for those records, clinicians and historians argue the information can matter for more than closure. Dr. Christine Moutier, chief medical officer for the American Foundation for Suicide Prevention, said families may want comparable context to what people seek in other medical history, describing it as information that can help people understand how vigilant to be. Alexandra Lord, a historian writing a book about suicide in her family, said some families cannot establish when a relative died, let alone how, and described struggling to gain access to New York state records about her great-grandmother.
Privacy protections are central to why access varies. The federal HIPAA law enacted in 1996 protects health information, including diagnosed conditions and what care a person received, and the protections last for 50 years after someone dies. Some states adopt rules that are narrower than New York’s, including approaches described by the article for Ohio and Maine, while New York’s Office of Mental Health has said records can remain sealed “in perpetuity,” with releases generally limited to patients and their immediate family and sometimes to medical professionals with a justification or to historians under agreed conditions.
In other states, reforms have moved faster. The article said Massachusetts was “similarly restrictive” before a reform push produced a new law last year that made public state hospital records for people who have been dead at least 50 years and also opened records for state hospital cases from at least 75 years ago. The change followed a commission report discussing abuse and neglect in state institutions, including patient sterilizations at a state hospital in Monson, and the article said one commission member, Alex Green, described the state’s nondisclosure as a “cover-up” of abuses disabled people endured.
New York lawmakers have put similar changes on the table. This year, state Sen. Pat Fahy introduced a bill that would designate records and information relating to a patient who has been deceased for 50 years or longer as “historic records,” removing them from privacy protections. Fahy cited New York’s troubled institutional history, including conditions at the Willowbrook State School on Staten Island, and said, “If the person is deceased, there should be an availability of these records to help give the family closure,” adding that “Leaning from our history is one of the best ways to give us insight into how we do better in the future.”
Even with access barriers, historians and researchers say families sometimes find other ways to piece together mental-health history. The article described using online genealogy services such as Ancestry.com (at a cost), veterans’ military pension files that can include details about mental health, and old newspapers that sometimes reported on when residents were sent to state institutions. Researcher Ryan Thibodeau said more people may be interested than is commonly realized, noting that in the 1950s, at the peak of institutionalization, more than 500,000 people were in state hospitals.
The story also highlights how institutional practices themselves shaped the records families seek to access. The article said the U.S. saw growth in state institutions for people with mental illness in the 1800s, and that while asylums gradually became psychiatric hospitals, confinement practices did not always improve; it cited discredited treatments in the 1900s such as lobotomies and induced comas. For advocates, the records that remain—or do not—are therefore both a family history resource and a way to understand how institutions operated.