William McCormack

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 | william.mccormack@yale.edu .

  • pegasusgiraffe

    Just watched “Three Identical Strangers”.
    The fact that these records have been blocked off from the SUBJECTS of the study is completely unethical, inhumane, and deplorable. This is a disgusting abuse of power and playing with people’s lives.
    These records must be unsealed immediately.
    The Jewish Board of Family and Children’s Services should be utterly ASHAMED that they are hiding this information.

    • disqus_sy4RH054K5

      pegasusgiraffe gg

  • S Ki

    These kids who were being studied HAVE THE RIGHT TO SEE THIS DOCUMENTATION. SImple. Their families and themselves have been LIED to. Most of the people who did this research are dead. They should open these files NOW. If this guy were still alive, he would be charged with the murders of the suicides that occurred.

  • fede4488

    No wonder antisemitic conspiracies exist…

  • Highnrising

    Why is there no mention in this article of any legal action filed by the subjects of the experiment? Surely, several of them must have brought suit–over the experiment itself, as well as over access to the records.
    The state or federal court should be deciding what to do with the records and who should have access to which ones, as Yale’s hands are clearly tied. The court could appoint a panel medical ethicists to study the matter and issue a recommendation.

  • Democrats Only

    Hard to believe that so soon after WW2 that a Jewish Dr would do this to Jewish kids. The Nazi Dr had similar fascination with twins. I watched the CNN documentary and still astounded this could go on or be allowed to go on without any of the parents being told. I think they should be forced to give the records at least to the people studied.

    • mark walker

      i agree 100 percent! open it all in 2021 so those who were nder the looking glass may see what was so important to have their sibling torn from them.

  • NotReveen

    The experiments performed on these people by so-called psychiatrists should be treated no differently than blood tests performed by hematologists (for instance). In other words, these people have a right to the information.

    Furthermore, the one and only reason psychiatrists don’t overwhelmingly hold this point of view is because psychiatrists tend to discount themselves. They tend to believe that their so-called science is in no way comprable to that of a hematologist, and certainly not legitimate enough to meet the most basic ethical standards of medical science. That’s not an opinion. And it’s not even a knock on psychiatrists. It’s an objective observation.

    Think about it: Would a hematologist make the same kind of arguments about withholding medical information as these psychiatrists do? Would they withhold information about the presence of cancer or other diseases simply to benefit a silly study? Of course not. So why are psychiatrists treated so differently when they withhold information relevant to the well-being of individuals, as above?

    But more to the point, the people who were manipulated and studied — the identical siblings — shouldn’t be requesting information about these studies. They should be demanding their so-called medical records. They already own these studies, as the studies consist of nothing but so-called medical observations made on them by so-called medical doctors. They have a right to that information — and to the conclusions reached by the doctors who observed them.

    It’s time to make a choice, psychiatrists. Are you really medical doctors, or are you something else?

    • http://www.design-swag.com/ Cindy Fahnestock-Schafer

      agree.

    • Rosalind Dawson

      “Think about it: Would a hematologist make the same kind of arguments about withholding medical information as these psychiatrists do? Would they withhold information about the presence of cancer or other diseases simply to benefit a silly study? Of course not.”
      ——————————————————————–
      Yes, they would. Check out these two instances in which the U.S. government participated in unethical treatment of patients:

      The Tuskegee Experiment https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6258045/

      Guatemala STD Experiment
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3828982/

  • nyquil762

    Yale ought to be ashamed of itself. As an institution this bureaucratic behavior astounding.

  • nyquil762

    Yale should be ashamed of itself. Their arrogance and BS excuses are mind numbing. This is outrageous and unacceptable.

  • Sabrina Anne

    This is disgusting. More respect should be granted to the individuals who were subjected to this unethical scrutiny, instead of prioritizing and fearing litigations for releasing these documents

  • MarioKestler13

    In the article, someone said that the ethical regulations on reaserch or studies were not the same back then as they are now. I agree. That’s why we need to learn from those mistakes and DO THE RIGHT THING NOW, that wasn’t done back then, not try to cover it up like it was something harmless. Look, I really get why Neubauer did what he did, and I’d probably do it myself for the sake of science, but the extremely unethical way he did it is just plain wrong. There should’ve been a protocol to follow, and there should have been consent, which is the basis for any study involving humans. And now, the Child Development Center of the Jewish Board of Family and Children’s Services and the University of Yale have the NERVE to deny the COMPLETE information of the study to those unknowingly involved? To me, that’s just as evil as what Neubauer did himself. It’s hidding the truth from the affected participants, and holding the information for scientists, which could determine if the results of the study were indeed purposeful, or just a cruel experiment with no scientific background.

  • shhh_quiet

    This is a hideous perpetuation of the unethical treatment of the people subjected to this “study”. Yale needs to be forced to release all documents to the children (now adults) and their parents who were unknowing subjects. And I also call BS on the nonsense that “it was different then”. These are highly intelligent people conducting the study and it was deliberately designed, including taking every action to avoid the detection of others- which continues to this day! Ethics are ethics. If, as a medical professional, you knowingly withhold something related to a person’s medical history it is intrinsically wrong. Yale needs to release the information.

  • https://anidict13.tumblr.com Anidict13

    It’s so hard to understand their fears. I thought the Jewish Board has changed their members and therefore the ones responsible for facilitating the unethical experiment were their predecessors. And I doubt Yale will get a lawsuit if the disclosure of the data and findings were petitioned by the masses. The power of the public can even pressure the Jewish Board into granting access or transfer the ownership or something. Not to mention, who the hell are they protecting?? The people who wants access to those unethically acquired data were the deceived participants themselves! Between the rights of the (again, unethical) researcher and the rights of the deceived and unwilling participants, obviously the rights of the subjects should overshadow researcher. The fact that he experimented on unwilling (and unable to decide for themselves because they were infants) children should offset his rights or something. Not to mention he has been dead for almost 11 years — he literally will not be able to take responsibility for anything at this point! So just release the studies to provide closure and transparency to the victims!

    And the concern about how the release of the document might cause other (probably private) researchers to hesitate donating to the archives, doesn’t that imply they might have possibly acquired data either borderline or completely unethically as well? Are we not supposed to discourage this in order to progress forward in research without using unethical means? Who are you protecting? Who will benefit from this?

    And besides, let’s be real here. With the amount of public exposure it gained, there’s really no benefit in withholding information for the sake of the “greater good”. The greater good is really the thing. Heck, there might even be a chance that the participants will let researchers make use of the data collected so that at least, there would have been some use for it. That the experimentation on them wasn’t for nothing. One thing to consider after all is that the victims that are publicly known are more upset that there was no definitive conclusion. They believe that their separation was for nothing! The research’s release will grant a chance to arrive at a more substantial conclusion, even if it might end up as ‘inconclusive’.

    But honestly, this nature vs nurture was so overboard and unnecessary. I mean, it is important but I don’t think it’s a pressing matter to the extent that family fragmentation is necessary/ warranted. Is the conclusion really that important? Does it really play a key role in the progress or development of society? It’s one of the mysteries of life that is alright to stay as a mystery indefinitely and will not cause harm to anyone if left unsolved for a long time. It’s like fixing something that wasn’t actually broken in the first place and parts were broken and dented during the progress.

  • Otto

    I, for one, commend Yale for sticking to their guns. Doing otherwise would detract from their reliability and credibility as a scientific institution in my eyes. Apparently mine is an unpopular opinion, but to me this is an outstanding display of integrity on their part. Unless I really missed something here, this guy didn’t chop the kids up, dose them with acid, or light them on fire, so the people making Nazi references can go ahead and calm down.

    I’m not unsympathetic to the involuntary participants, but life isn’t always fair. ’23 and Me’ or similar services exist now, so that’s a plus, so at this point, I doubt there is a whole lot in the records that people haven’t already found out, or can’t find out via alternate means.

    That’s just my two cents, I don’t normally comment on internet articles, but some of y’all getting so uppity about is something that has absolutely nothing to do with you need to take the energy you’re wasting and put it into something useful. Go plant a tree, volunteer at an old folks home, read a book to your kids, pet a dog, give a squirrel a thumbs up, high=5 a homeless dude, enjoy a burrito, I don’t care, but, for the love of Cthulu, please don’t waste your time whining about how random strangers need to sue Yale on the internet, because I would bet my bottom dollar that not a single person commenting on this article even knows somebody who knows somebody who was directly affected by this to begin with. Litigation isn’t the automatic answer for everything, kids.

    • Debracadabra

      You are obviously not an adoptee, my apologies that don’t respect your opinion on this matter. You know where you came from and have not a inkling of the deep dark feelings of an adopted person. I ran a support group for members of the triad (Birth Parents, Adoptees and A Parents) for over 5 years and all of our members had issues. Take a look at the statistics of male serial killers (rejected by mother) and you will see the enormity of this problem in society. Thank goodness for DNA and States who are now opening original birth certificate records. May I remind you that these study subjects were victims as are all placed children whose parents are chosen from the roll of a dice. Consider yourself lucky that you know where you came from.

  • kell490

    I wonder if a carefully crafted ballot measure could be passed to make it illegal to seal documents of an un-ethical study retroactively. Make any such study in the future a criminal offense with a 10 year prison sentence.