Bioethics & Clinical Research: Twins separated at birth… for research


Paula Bernstein and Elyse Schein

The story of Paula Bernstein and Elyse Schein sounds like something from a movie. The identical twins were separated at birth, adopted by different families. In their early 30s Schein started looking into information about their birth mother and in the process found out that she had a twin. The women were re-united, happily, via an adoption agency in 2004.

Those details alone make for an interesting story, but it becomes even more amazing when you add in the fact that the twins were separated as a part of a psychological study. The research was conducted by Peter Neubauer and Viola Bernard, who wrote at the time that the study “provides a natural laboratory situation for studying certain questions with respect to the nature-nurture issue and of family dynamic interactions in relation to personality development.” identical_strangers_cover.jpgThe adoptive families were never told their children were separated twins, only that they were involved in some kind of developmental study. Bernard has passed away, but Bernstein and Schein were able to track down Neubauer. They say he would reveal nothing about the study’s findings to them — and the results are sealed until 2066. Bernstein said on CNN that Neubauer expressed no remorse for his role in the study. “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,” Schein said in that same CNN interview. (Lawrence Wright, the author of a book about twin studies, said to NPR’s All Things Considered of the study, “From a scientific point of view, it’s beautiful. It’s practically the perfect study. But this study would never happen today.”)

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. The sisters were amazed to find out that even though they had been separated from birth, they shared a number of similar mannerisms, career choices and interests (even the same favorite movie, “Wings of Desire” by Wim Wenders). But their lives had still taken somewhat different paths. On NPR’s Talk of the Nation, the two women talked of an apprehension about “who had done a better job with their DNA.” Schein says she initially felt that Bernstein looked down upon her and the choices she had made, which led to some difficult conversations. They say they’ve now worked through those feelings. By:Greg Dahlmann

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I traced this story from an interview with the twins on BBC Radio 4 in England (conducted by Fergal Keane on New Year’s Day 2008). I have a professional/academic interest in this (I am a clinical psychologist and mental health policy reseracher) and I am intrigued by the way in which the arrogance of professional researchers persisted for so long after the 2nd WW. This study with its pupeteer logic is consistent with the residue of eugenic research on mental disorder conducted by Franz Kallmann in New York post-war and Eliot Slater in London. Both studied with Ernst Rudin in Munich in the 1930s. Leaving aside the eugenic trace here (I can send more material to anyone interested)the case highlights an ethical challenge at the heart of current biological psychiatry. The latter consistently subverts Kant’s second categorical imperative that people should be treated as subjects not objects and that they should be afforded personal respect, as an end in itself, rather than being used as a means to an end (the professionals’ diagnostic or research aims). I would be interested in hearing from others on this important question that goes well beyond the stresses and strains placed upon these two particular women.

Professor David Pilgrim

Like these twins our triplet was separted from us. Seon and Jinnah are our names we are fetnarl twins but found out that our triplet is alive in South Korea I think she is my identical twin not my sisters we both like to do oragami.

I am currently doing an ethical review of these types of experiments where twins are separated without their knowledge for a bioethics class. I would appreciate it if someone (Specially David Pilgrim) could send me information on this subject and different ethical positions regarding this to rborges@lcg.unam.mx

Thank you!