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07/11/2018

Secret Twin Experiments & Bioethics.net 15 seconds of fame

by Craig Klugman, Ph.D.

On the advice of a family friend, I went to see the new documentary, Three Identical Strangers. All that I knew going into the story was that it was about a set of triplets, separated at birth who discover each other later in life. The first part of the film is about how they learned of each other. One ended up going to a small college where a second twin had been a student the previous year. A good friend was floored by the resemblance, especially when he learned that both men had the same birthdate and were adopted from the same agency. That reunion is covered in the news and upon seeing the news report, the third triplet realized that he was starting at pictures of himself. The boys meet each other, realize how much they have in common, go on the media circuit, move in together, party together, and eventually open a restaurant together.

Meanwhile, the boys’ six adoptive parents are angry that the adoption agency, a large Jewish, New York-based group, never told them that they were adopting babies who had identical siblings. The agency tells the parents that it would have been harder to place 3 boys together, but the parents felt that the agency was hiding something more. It at this point that the story gets stranger and if you plan to see the film, I suggest not reading any further until you do.

A journalist contacts the boys after hearing about their story and lets them know that they may have been part of a twin study. Psychologists and researchers Viola Bernard begins in the 1950s and Peter Neubauer continued until 1980, a study to answer the question of whether we are formed more by nature or nurture. The study aimed to separate newborn twins put up for adoption and then longitudinally assess their growth and development. The children and their adoptive parents would never know that the young subjects were twins and triplets. The researchers worked with Louise Wise adoption agency which placed the triplets and many other children.

The study was made popular in 2007 when two female twins published a book, Identical Strangers—thus the title of the film—on their experiences of discovering themselves and the existence of the research study. And this is where bioethics.net gets its 15 seconds of fame. During one brief scene in the film, one of the two women is running an internet search on the study and the computer screen we see clearly shows a listing for “bioethics.net.” That article was written in 2007 by Greg Dahlmann, a NY state journalist. Dahlmann cites a CNN interview with the twins (no longer posted): “We felt that our lives had been orchestrated by these puppet masters, who put their research needs before the needs of us and the other twins and triplets.” That feeling is echoed in the documentary when one triplet says “I feel like we were lab rats.” The post ends with the women’s surprise at how much they had in common (both went to film school) and states “The highly questionable ethics of their separation acknowledged, the experience of Bernstein and Schein does shed some interesting light on genetics — and maybe even cloning.” As the new documentary shows, this was only part of the story and Dahlmann does not go into the ethical issues in this case.

In 2005 psychologists Lawrence Perlman and Nancy Segal published an article about the “unfulfilled promise” of this study. Perlman appears in the film as well, where the viewer learns that at age 24 he joined the study and was tasked with home visits to interview, record, and track development of the subjects. He regrets that the results were never published. In addition, Neubauer donated his papers to Yale University Archives where remain under lock and key until 2065 or with the permission of the Jewish Board of Family and Children’s Services—an organization in which Neubauer was active, according to the film. Of course, the secretive nature of these papers has led to conspiracy theories about the study: study human development, study mental illness through generations, and more. In the film, the researchers show no remorse for what they did, simply saying that it was a different era and people were excited about the possibilities of psychology.

Many other factors between the triplets that were seen as interesting or evidence of genetics later turn out to be something else. All three boys were adopted by parents from different socioeconomic and class statuses: upper socioeconomic professional class, middle class, and blue collar immigrant. All three boys had sisters that were two years older than themselves and also adopted. These similarities, we learn from Pearlman, were not accidents but were part of the study design. The film concludes that it was not just the boys who were the study subjects, but the entire families—without consent or even knowledge that they were manipulated and studied.

One could probably write a dissertation on the ethical violations of this study. In 2009 by Nancy Segal and Wendy Johnson, psychologists, wrote “Dr. Viola Bernard’s intentional separation of adopted infant twins, and Dr. Peter Neubauer’s (Neubauer & Neubauer, 1990) longitudinal study that took unfair advantage of these p. 8 twins and their families also hurt the ability of other researchers to make constructive use of twin research (see Segal 2005b; Perlman, 2005).” They acknowledge that the forced separation of twins was problematic. However, the greater concern is less about the damage caused to the children than about the hiding of data and loss to science.

What about the loss to the victims/subjects who cannot access files that tell the story of the study to which they were subjected without their or any parents’ permission? Should they have access to these records to see what was done to them, why, and what conclusions were drawn? Not only are the files locked away until the subjects would be 105 years of age, but the data and results were never published (Segal and Johnson’s lament). However, in 1996, Neubauer and his son, a writer, published Nature’s Thumbprint, which suggests that most of our personality traits and development are due to genetics.

A short list of ethical violations in this study also includes the act of lying to children and their adopting parents, the harm of breaking up of twins and triplets (which the film suggests may have led to a high rate of suicides and coping difficulties by the subjects—e.g. young children banging their heads against walls). The families were told that the home tests and observations were part of a study of development in adopted children. Thus, these families were subject to surveillance, recording, and testing based on false information. One could say that deception studies are permitted, but even in those, at some point, subjects have to be debriefed about the deception. These families never were. Films do have editorial perspectives and put forth a point of view. This one believes the studies were unethical and immoral, destroying lives, pointlessly. If the data had been published then maybe something would have come out of it, but not even that has happened.

If a study of this nature came by my IRB, we most certainly would not approve it. I am not saying that twin studies should not be done. Many twin separation studies have looked at children who were accidentally or naturally separated from their birth parents—not when twins and triplets were deliberately and deceptively separated by adoption agencies in the name of science. These children were viewed as datapoints to prove a theory—that nature is more important than nurture—instead of as human beings, violating Kant’s principle of humanity.

At the end of the film, a note states that the surviving triplets (I’m not giving away all of the twists in this “straight from the headlines” film) were given access to heavily-redacted archive documents related to them, about 10,000 pages worth. The brothers report nothing significant in what they have read. The film’s conclusion about the study was that it was awful, many questions remained unanswered, and that it may just have proven nurture is more important than nature.

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