Memories of the Child Development Center Study of Adopted Monozygotic Twins Reared Apart: An Unfulfilled Promise

Abstract

This month's News, Views and Comments column differs from those that have appeared in previous issues. The first of the companion papers presented here offers the first in-depth historical overview of Dr. Peter Neubauer's controversial study of infant identical twins separated at birth, launched in the 1950s. The author, Dr. Lawrence Perlman, was a research assistant on the project while earning his doctoral degree in clinical psychology from New York University. His paper is followed by my own critical appraisal of issues raised by that study, some of which are still timely today. Readers are invited to forward their comments to me (nsegal@fullerton.edu) for possible consideration in future columns of Twin Research and Human Genetics.

Experiment on identical siblings separated at birth: ethical implications for researchers, universities, and archives today

“…The study has undermined principles of non-maleficence 23 and individual and social beneficence, given that the researchers and agencies involved have refused to provide participants with information that may be helpful to these subjects' personal health and well-being. 24 Moreover, since the study was never published, and was 'not well organised', 4 having no clear plan for analysing the data, the potential societal benefits of the study were greatly diminished, thereby placing burdens and risks of participating on the study subjects and their families without any benefit. After 15 years of the study, no one had begun (or been able) to properly compile and analyse the information gathered.…”

“…After 15 years of the study, no one had begun (or been able) to properly compile and analyse the information gathered. 4 The study design, including separation after siblings had spent up to 6 months together, may have itself caused harm, 1 6 25 and at least three participants appear to have later committed suicide. 10 Hence, adoption agencies do not now separate such twins.…”

“…During the siblings' time in foster care at LWS, and after they were adopted into homes, Neubauer's team conducted psychological research including film recording, family and play-time observations, interviews and psychological testing. 4 Some evidence suggests that after the onset of the study, the adoption agency recruited and separated additional siblings for the purposes of increasing the sample size. 5 7 8 LWS appears to be the only agency at the time actively supporting separation.…”

“…Biological parents, adoptive parents and participants were never told the experiment's true purpose (adoptive parents were told only that the children were enrolled in an adoption study) or the fact that identical siblings existed. 10 Further, Neubauer never published the study's results, 1,4 raising ethical concerns.…”

Twin Towers: The Ones Left Behind; Research Reviews: Chimeric DZ Twins, DZ Twin Mothers; Revisited: The New York Child Development Center Twin Study; New and Unusual Twins

“…Rare variants of GDF9 have recently been compared in mothers of DZ twins and controls (Palmer et al, 2006). The prevalence of the rare forms was significantly higher in (Perlman, 2005;Segal, 2005b (Perlman, 2005), I made contact with Dr Dorothy Krugman, then 82 years old, who had served as the first psychologist on the CDC study of adopted MZ twins reared apart. We spoke on the telephone at length on May 2, 2005, and she graciously consented to meet with Dr Nancy Segal and me in her home on January 2, 2006.…”