Surprise turns to shock and then outrage. That’s the theme of “Three Identical Strangers,” a documentary film released last summer and now being screened by CNN. The film also has a less well-known precursor, “The Twinning Reaction.” Both chronicle twins and triplets born in the 1960s who were separated as infants and adopted by different families who had no idea of the other siblings’ existence.
The separation and secrecy were unethical aspects of an experiment that sought to examine the contributions of genetics and environment to child development. The children (who are now adults), their families, and the public deserve answers to many unanswered questions.
Although some aspects of the research have been reported over the ensuing decades, clear information about its aims, design, and results have never been published. The study records reside at Yale, where they were deposited by the lead researcher, Dr. Peter Neubauer, and sealed until 2065. No one — not the subjects, reporters, filmmakers, or researchers — has been given access to anything more than snippets of information.
Rather than a mere “truth is stranger than fiction” cinematic spectacle, or another historical example of unethical research, this study should be recognized as an ongoing violation of research ethics in need of a current remedy.
What happened?
Neubauer was a child psychiatrist and director of the Child Development Center of the Jewish Board of Guardians (later renamed the Jewish Board of Family and Children’s Services) in Manhattan. The National Institutes of Health contributed some funding for the study, and it was also supported by philanthropic foundations. To date, no one has said for sure how many sets of multiples were involved, but the best estimates suggest at least 11 sets of twins and one set of triplets.
All of the adoptions were managed by Louise Wise Services, which provided Neubauer with access to the multiples for his research. Some reports suggest that Wise made the decision to place the infants in separate families and that it was not a deliberate study intervention. Yet aspects of the placements seem to have been driven specifically by study design, including the selection of families based on differing socioeconomic status. In addition, at least some of the birth mothers had been diagnosed with mental illness. These features may have been relevant to investigating the relative effects of the status of adoptive families on “nurture” and maternal health history on “nature.”
Home visits and child testing were conducted for years following the placements. Families were told that these were part of routine monitoring after adoption. They were never told about their adoptive child’s biological siblings or about the nature of the study.
The ethical violations continue
It can be controversial to apply modern ethical standards to events that occurred during an earlier time, especially when it comes to assessing blame. Nevertheless, in this case there is some indication that ethical concerns were raised even at the time the work was undertaken. Regardless of what the researchers thought of the study’s ethical propriety then, today we can see that it violated all modern guideposts for ethical research with human beings.
The data were never fully analyzed or published, so the study has not yielded significant scientific value — and it isn’t clear whether its design would have been adequate to do so. The children and their adoptive families were selected on the basis of their vulnerability (namely the need to be adopted and the desire for an adopted child). The risks they were exposed to in the study were not limited to the minimum necessary to answer the study questions, and the well-being of the “participants” continues to be disrespected by virtue of ongoing secrecy about the research.
The most important ethical violation in this case involves the lack of informed consent from the families studied. Today’s research regulations sometimes tolerate deception in research, but only when it entails minimal risk, does not violate participants’ rights and welfare, and includes plans to debrief participants as appropriate. Clearly the first two criteria were not met for this study. Yet the ethical requirement to debrief still can be fulfilled. Failure to do so now constitutes an ongoing ethical breach, rendering this study not only a historical example of unethical research but a modern example that is being allowed to continue today.
All of the multiples who were separated at birth and their adoptive families should be notified and told what happened. It is shocking that some may still be unaware of their involvement. They should also be told why the research was done and what, if anything, was learned.
Exactly who should debrief those involved in the research is a difficult question to answer. Neubauer died in 2008, surviving members of the research team have limited information, and Louise Wise Services closed in 2004. Yale has the records, but was not engaged in the research. The funding entities, including the NIH, bear some ethical responsibility, but our Freedom of Information Act request revealed that “grant records have a retention period of 10 years so the … records would have been destroyed many years ago.” Given its relationship to Neubauer, the Jewish Board of Family and Children’s Services has the strongest obligation to study subjects. It also maintains exclusive authority to grant access to the records at Yale.
After initially rebuffing subjects’ requests or offering only pages of heavily redacted raw data, the Jewish Board of Family and Children’s Services seems finally to be moving in the right direction. Following reporting about the study by ABC’s “20/20” in March 2018, the board sent apologies to some of the individuals involved, acknowledging the board’s “past error” and that its prior “efforts have fallen short,” while seeking to “set a new moral course for the future” including “the task of repairing past wrongs and making them right.”
A path forward
How can that task be best accomplished? Determining how to respond to the discovery of previously secret, unethical research is not uncharted territory. For example, in 2010 it was publicly disclosed that a Wellesley College historian had discovered that the United States government had been involved in carrying out never-published studies in which vulnerable Guatemalans were intentionally infected with sexually transmitted diseases in the 1940s. President Obama quickly apologized and tasked his bioethics commission with finding out what happened.
Although there are many differences between Neubauer’s study and what happened in Guatemala, there are important lessons to be learned from the response to it. All involved parties should apologize to those whose lives have been indelibly shaped by the research that separated siblings, take responsibility for their (or their institution’s) involvement in any wrongdoing, and come together to find answers for the affected individuals.
The Guatemala study remains the subject of ongoing litigation, but the presidential commission’s approach to investigating and finding answers offers an important model that is far superior to the obfuscation that has characterized the approach to Neubauer’s study so far.
At the very least, the affected multiples and their families should be given their own research records. Regardless of the terms under which the records were sealed, a court might be convinced to nullify relevant legal obligations on the grounds that adhering to them would contravene public interests — one basis on which the law permits contracts to be deemed unenforceable. The public interest at stake here seems particularly strong: respecting the wishes of individuals who were deceptively enrolled in unethical research and whose lives are etched in the records.
The better course, however, would be for the Jewish Board of Family and Children’s Services to voluntarily instruct Yale to release the records to the affected individuals.
The board should also grant limited review rights to experts in psychology, child development, bioethics, and history, among others, to thoroughly review, synthesize, and summarize the research so it will be meaningful to those who unknowingly took part in it while protecting any individually identifiable data that should remain private.
Although there are serious concerns about the quality of the science in this case, it is important to show respect for the subjects by answering their questions about whether anything was learned from their involuntary sacrifice. Expert review can also determine whether the findings should be published more broadly, while recognizing the ongoing debate about how to handle the results of unethical research.
The number of people directly affected by Neubauer’s study is relatively small. Yet the magnitude of harm is great. This was not an isolated psychological experiment but an extended deception affecting the lives of adopted children and their families across generations. Although those harms will never be fully repaired, it is time for a socially responsible public and the research ethics community to help support these individuals in their effort to find answers. This work should no longer be left to documentary filmmakers, journalists, and the subjects themselves.
Karen Glanz, Ph.D., is a professor in the Department of Biostatistics, Epidemiology and Informatics at the University of Pennsylvania Perelman School of Medicine and professor of nursing at Penn’s School of Nursing. Holly Fernandez Lynch, J.D., is an assistant professor in the Department of Medical Ethics and Health Policy at the University of Pennsylvania Perelman School of Medicine; she was senior policy and research analyst for President Obama’s Commission for the Study of Bioethical Issues during its investigation of the Guatemala study.
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