In the depths of Yale’s library collections, records from a controversial study that separated twins and triplets at birth remain sealed, despite demands from the study’s participants to see their own files.
The study, conducted by child psychiatrist Peter Neubauer throughout the 1960s and 70s, involved at least eight twins and a set of triplets who had been separated at birth at the now-defunct New York City adoption agency Louise Wise Services.
In 1990, a decade after abruptly ending the confidential study, Neubauer and the Child Development Center of the Jewish Board of Family and Children’s Services arranged to house the locked records at Yale. The Jewish Board set forth terms that gave the organization the power to approve or deny any requests to access the records for the next 75 years.
The records will remain sealed until Oct. 25, 2065. The study came into the spotlight after this summer’s documentary “Three Identical Strangers” and 2017 documentary “The Twinning Reaction” highlighted the stories of the participants and explored the study.
“Yale does not know why the Jewish Board made [the decision to seal the records],” said University Director of External Communications Karen Peart. “Yale accepted the records because Manuscripts and Archives determined that the records held long-term substantive value for the research community.”
Neubauer conceived the experiment to compare the development of separated sets of twins and triplets with fellow psychiatrist Viola Bernard, to explore one of psychology’s most pressing questions — that of nature versus nurture, or whether human behavior is more affected by environment or genetics. Researchers did not obtain the consent of participants or their adoptive families. They also failed to inform families that their child had been separated from a twin during the adoption process or in their later observation of the children, according to Sharon Morello, one of the subjects of the study.
At an internal meeting at the Medical School about the records in July 2013, Yale’s counsel explained the University was in no position to breach the terms of Neubauer’s 1990 gift by unilaterally deciding to unseal the records, according to Michael Alpert ’07 MED ’14, who emailed faculty at Yale Medical School to organize the meeting after learning of the study in 2013. If Yale had ignored the stipulations of the Jewish Board, they would potentially suffer a lawsuit. The precedent would also discourage future donors from donating their papers to the University, according to Stephen Latham, who chairs Yale’s Human Subjects Committee and attended the meeting.
Alpert said that everyone at the meeting sympathized with the study’s subjects and agreed that the study was unethical by today’s standards.
“I don’t think [the study] would be allowed to go forward under current standards,” Latham told the News last week. “But you have to bear in mind that the study was set up well before any of our current regulations were in place … we didn’t have our rules governing research on human subjects until decades after. We don’t commonly retroactively apply ethical standards.”
Morello told the News that researchers came to her home periodically over a span of at least 12 years during her childhood. She added that they administered interviews with her, took pictures and recorded videos of her riding a bicycle and doing ballet.
They concealed the purpose of their visits, she said, telling her parents that the routine visits were to ensure that Morello was doing well in her adoptive home. She was 49 years old when she heard she had a twin.
“I remember them doing a lot of testing,” Morello said. “Picture identification, doing math problems, I think I even read to [a researcher] at one point.”
According to the two documentaries, many of the separated children dealt with mental health issues in adolescence and as adults. Director of “The Twinning Reaction” Lori Shinseki told ABC’s 20/20 that of the at least 15 children separated after birth by Louise Wise and Neubauer, three have committed suicide. Eddy Galland, whose fellow triplet brothers David Kellman and Robert Shafran are the protagonists of “Three Identical Strangers,” committed suicide in 1995.
Many of Neubauer’s subjects have encountered issues accessing the records now housed at Yale. For instance, in 2011, the Jewish Board denied two separated twins — Howard Burack and Doug Rausch — the request for access to the sealed records in a letter that claimed they were never participants of the study. Ultimately, Shinseki helped them prove their participation.
A spokesperson for the Jewish Board told the News that all individuals were notified of their participation in the study and “provided with copies of their records that relate directly to Dr. Neubauer’s study of them.” The Jewish Board did not clarify when individuals had been notified, but did note that redactions to the materials were made to ensure the privacy of other subjects.
Morello received a limited selection of 700 pages about two years ago, but frequent redactions made them nearly undecipherable “black pages of nothing,” she said. She has not received any of the photos or videos researchers recorded — though Yale University Library’s guide to the records lists that the films and tapes are stored in Boxes 50-58 in Yale’s Library Shelving Facility in Hamden, Connecticut. Morello feels strongly that 12 years of research must have yielded more than 700 pages of material.
“I think [Yale] should be doing something,” Morello said. “Again it was all — all the records, all the data that was taken, it was all under false premises — they really have no right to it. It’s not theirs or Neubauer’s, it’s whoever’s they took it from.”
According to Stephen Novak, the head of Archives and Special Collections at Columbia University’s Augustus C. Long Health Sciences Library, a deed of gifts — the contract that transfers ownership of concrete or intellectual property — is a legal document. Sealing documents is not an uncommon practice in private collections, Novak explained, and usually relates to privacy concerns or the donor being uncomfortable revealing something to the public. Columbia houses Bernard’s papers, a small portion of which is related to the study — but contain no individual observations and records — and is sealed until 2021. Nearly all of her other papers are currently accessible.
Novak explained that when Columbia received Bernard’s papers, the university’s literary executor — the individual who was entrusted with the transfer of the papers — was under the impression that Neubauer’s adoption study records at Yale would also be sealed only until 2021. The inconsistency in release dates at each institution may result in Columbia extending the seal on Bernard’s papers until 2065.
“We have to decide in the next three years whether we keep these closed until 2065 or open them up in 2021,” Novak said. “I would be the one to make that decision if we feel that we need to be consistent with Yale … we’d probably consult with Columbia’s general counsel.”
Neubauer died on Feb. 15, 2008.
William McCormack | email@example.com .