New York City. NYC. The Statue of Liberty glistens in its harbor. The ultimate symbol of what this country stands for. Ellis Island in NYC is just a stone’s throw away – the gateway to America. The Freedom Tower, the Empire State Building, the hustle and bustle of busy, free New Yorkers and visitors from around the world. It’s the last place you would expect censorship. But that’s just what we got this past year when the New York City Department of Health & Mental Hygiene (DOHMH) decided to pull its Birth Index books that were on loan to the New York Public Library (NYPL) in NYC to keep the public from viewing their contents.
Genealogists lost a valuable resource that day in NYC. Adoptees who were born in New York City lost even more. The Birth Index books contain information that may be key to their identities, something that most people take for granted, but what many adoptees yearn for and live painfully without. When I found my given name listed in the 1971 book a few years ago, I felt a sense of joy. There it was – a record of my truth.
I didn’t learn anything new that day. I had previously found out my given name through other means long before. I had searched for and met both biological parents. I did it respectfully. But I knew many others were not as lucky, and if I could help other adoptees uncover the truth about their own identities, I needed to do that. So I wrote an article about how to do it. Only in NYC, I thought. I wrote the article and shared it with pride. How progressive my city was to have such a treasured resource available in the public library.
When I learned about the removal of the books, I was angry. I asked about it at the public library, and the woman I spoke with referred me to DOHMH. Because of the complexity of the information, I was looking for, it was recommended that I proceed with a Freedom of Information Law (FOIL) request, which I did. What I found within the materials I received and in subsequent conversations was troubling to me.
It turns out that the Birth Index books were loaned to the Milstein Division within the NYPL by DOHMH sometime in the 1980s. For years, these records were made available to the general public. For years, adoptees born in New York City had an opportunity to uncover the secret of their original identity, which, in my humble opinion, is their human right.
Fast forward to 2008. Citing concerns about the Birth Index books due to the adoption of the federal Health Insurance Portability and Accountability Act (HIPAA) and identity fraud, the New York City Board of Health decided to amend the City’s health code to cease publication of the books and remove some important language that affirmatively allowed access to them by individuals interested in their own records and genealogists. These significant amendments, enacted without being vetted through the legislative process by elected officials, will continually negatively impact the rights of adoptees and genealogists unless they are reversed.
The Birth Index books remained at the public library for several more years, apparently because DOHMH wasn’t aware that they were there, even though they had been loaned by that very agency in its more progressive years. An email from the agency’s General Counsel to NYPL officials in March 2016 became the first step in the removal of the books, citing the 2008 amendments reflecting “the policies and practices of the DOHMH” and HIPAA.
For one, it’s interesting that the changes to the health code are described as reflecting the policies and practices of the agency whose policies and practices seemingly reflected the exact opposite some twenty years earlier. But it’s the hiding behind HIPAA piece that gets me. For those who know HIPAA, it sets a floor for the use and disclosure of protected health information. And while protected health information includes common identifiers such as name and birth date, it only does so when they can be associated with the health information that is listed as being covered.
But let’s play devil’s advocate to take it a step further. For argument’s sake, let’s say that the name of a biological parent and the date of birth of their child does constitute covered health information under HIPAA. What does that mean for me as an adoptee? To me, it means that my given name and date of birth are also careered in health information under HIPAA, and I will use this opportunity as my written request to DOHMH to provide me with that information within the required 30 days.
In any case, we know the provisions of HIPAA have nothing to do with the removal of these books. The decision to suppress this information lies squarely on the back of DOHMH and the New York City Board of Health. In fact, when I reached out to the Mayor’s Press Office to ask whether they supported the DOHMH decision to remove the Birth Index books from the public library, the only reply I received was “I’m not sure this is a question the Mayor’s Office can address since it involves what looks to be Health Department policy.” Wow. Not sure there’s a need to expand on that one.