Ethical Questions Remain in Controversial Twins Study: Further Information and Sources are Required to Find Resolve

In Response

Dr. Oppenheim writes a commentary with an accompanying interview segment in order to “set the record straight” about the Neubauer Twins study.1 Oppenheim's piece offers an unwavering defense of Neubauer as a pioneer in psychological research while failing to answer the legitimate ethical question raised by critiques. Her commentary also presents obscure and antithetical information that we believe perpetuates misunderstanding about the problematic research. This misunderstanding, in turn, yields a missed opportunity for learning from historic ethical missteps and from seeking reparation of such errors of judgment and conscience.

Oppenheim opens with a caustic review of Tim Wardle's documentary “Three Identical Strangers.” Her primary criticism rests on Wardle's artistic license in which several key aspects of the study are not mentioned. Oppenheim's intention, we believe, was to bring truth to the flaws she sees in the film that create misconceptions of Neubauer's research conducted from the 1960's to the 1980's. It was during that time that several biological mothers relinquished their newborn identical twins for adoption with the Louise Wise Services Adoption Agency (LWS), who enrolled the identical siblings in longitudinal psychological research and then secretly placed them into different homes. According to firsthand accounts from adoptive parents, the agency described the already ongoing research as important to understanding key aspects of child

development but did not mention the existence of identical siblings or the true purpose of the study.2 Parents also describe an implicit pressure to agree to continued research participation as a condition of adoption.3

Decades after the study's onset, several sets of separated siblings discovered the separation and research. Many of the study participants experienced personal crises of identity and anger towards those that organized the study. After attempts to access study materials in order to learn more about the circumstances of adoption, participants faced restrictions put in place by deeds of gift from several key study organizers.4 At present, materials from the project are held without access at Columbia University and Yale University until the years 2021 and 2065 respectively.5,6 Adoption records, in which descriptors of placement decisions exist, are likely housed at Spence-Chapin adoption agency, who absorbed the defuncted LWS in 2005, with access determined by the organization's executives.7,8

The author's view of the study is shaped by an exclusive interview with Christa Balzert, a project director and, according to Oppenheim, a

co-author, alongside Neubauer and Samuel Abrams9 (Clinical Professor of Psychiatry at NYU Psychoanalytic Institute and colleague of Neubauer), of an unpublished and inaccessible manuscript reporting the study's findings. The author's opinions of the study are similarly shaped by the manuscript's contents, though, it is unclear if she has reviewed it.

One cannot help but question Oppenheim's access to such revealing sources given that participants themselves have tried unsuccessfully to review study materials. Though Oppenheim never claims to have read the manuscript, in her article, and other academic installments, Oppenheim reveals previously unknown details about its contents. For example, even the name of the manuscript, though included in Oppenheim's commentary, is not listed on the Columbia University or Yale University finding aids.10, 11 What is more, in a 2019 article published in JAMA, Oppenheim describes the manuscript in detail without citation, leaving the reader to assume she has reviewed the document herself.12 If she has not read the manuscript, but is aware of its details based on descriptions from Balzert who allegedly contributed to the manuscript some 40 years ago, then Oppenheim's commentary on this topic must be viewed in light of her limited, secondhand knowledge.

We also question the identification of Balzert as an expert on Neubauer's study. Oppenheim states that her interview is a “one-time exclusive.” Balzert, however, gave at least one other interview on her involvement in the study. Lawrence Perelman, research assistant working on the Neubauer project in 1968, summarizes his own interview with Balzert in a 2005 article published in the Journal of Twin Research and Human

Genetics.13 There, it is revealed that Balzert joined the project in 1969, well after its onset in 1961, and left the project in the mid-1970's, prior to its conclusion. During her tenure, she “worked peripherally on the study,” mostly in data analysis.14 Balzert further discloses to Perlman that she neither conducted any of the home visits nor met any of the subjects. This account conflicts with Oppenheim's portrayal of Balzert as an authority on the topic.

Oppenheim admonishes other journals for rejecting her commentary and interview, an action she equates to academic censorship. She claims that her work was rejected because various editors disagreed with Balzert's viewpoint that the research was in fact ethical. It is not inconceivable, however, that legitimate academic forums rejected the work on the basis of its concealed sources—both the manuscript and the exclusive interview with Balzert. Without access to the sources in her article, it is impossible for academic peers to respond to Oppenheim's viewpoints or answer the valid ethical questions raised by critiques in response Neubauer's study.

Nevertheless, Oppenheim presents her work as unbiased interpretation of the interviewee's response. The author poses interview questions that direct the reader to regard the continued secrecy of the study design, the manuscript and the research records as a means to protect subjects' privacy. However, the reader will notice that Balzert herself never speaks to the concealment of study data or manuscripts as a helpful means to secure subject privacy. In contrast to Oppenheim, Balzert notes, “At that time most of the [adoptive] families were not aware that their children were multiples. It was to be expected that the publication of any kind of study would easily become sensationalized, as present events show, and come to the attention of the adoptive families without clinical assistance.”15

Balzert seems to suggest that study orchestrators came to recognize that the study caused harms that would require clinical care, leading researchers to hide their work out of fear of being demonized for their actions. All the while, Balzert fails to acknowledge the researchers' ethical obligation to provide ancillary care for ailments discovered during, or harms caused by the study. We might further question the motive of keeping the manuscript and research data hidden from participants after Oppenheim's claim in 2019 that all those involved in the study are now aware of their participation.16 At this point, we believe that participants should be afforded wider access beyond the limited documents already given, including the information from the unpublished manuscript.

In addition to concerns about Oppenheim's motives and sources, her tendentious defense of Neubauer includes a number of inaccuracies and contradictions about 20th century scientific practices, adoption procedures, and application of bioethics in research. One of the most egregious errors in the author's writing is the assertion that the adoptive parents provided consent to research participation and withheld disclosure of the existence of siblings. Oppenheim writes, “Adopting parents signed consent forms which explicitly acknowledged and agreed that they would not be told the facts of the birth family.” Yet, adoptive parents had no reason to assume a sibling existed as LWS was the only agency that routinely separated siblings, and did so in secret.17

Though Oppenheim minimizes consent, this issue is tantamount to ethical concerns in Neubauer's work. Notes from an LWS adoption committee meeting held on October 11, 1960, available to the public at Columbia University Special Archives Library in the Bernard Estate, include Gertrude Sandgrund, head case worker for LWS, describing the context, actions and adoption procedures leveraged by the agency during the time of the study. Sandgrund says:

The children referred to us by the JCCA [Jewish Child Care Association] are usually not surrendered children; and we have to take responsibility for this. In the simpler situations where the natural parents have indicated to the JCA some readiness to sing surrender, the only thing we need to do is ask the Department of Welfare to accept surrender from the parents. These simpler situations are rare; most of the JCCA situations are those where the mothers have absconded, or mothers are in mental hospitals; or there are two parents, one of whom is not available to sign surrender. In these cases JCCA refers the situation to us and we have to grapple with the problems and have our lawyers work on them. In the last few years we have become quite skillful in the 384 procedure which is to remove custody from the parents and transfer custody to us thus enabling us to place the children without participation of the parents. Of the 15 children on referral, seven have been freed for adoption thru[ough] our efforts which have gone on for a year or two. The other seven children are not yet available for adoption and we are at various stages of working on these legal proceedings.18

The above is damaging not only in its reveal of LWS's indifference for the wellbeing of biological mothers, but also in its militant use of legal loopholes used to acquire twins for adoption. The 384-procedure referenced by Sangrund served as the functional basis for twin separation and subsequent enrollment in Neubauer's study. The spirit of this procedure created a protection for children with deceased or unfit parents, and with no appointed guardian. To enact the 384-procedure for a child with a living birth mother, the parent was required to willingly surrender the child to the agency or be “declared insane or mentally defective.”19 After securing a surrender or mental illness diagnosis, the law allowed certified agencies to assume legal custody of children before finding an adoptive family.

Oppenheim contends that voluntary informed consent was not a concern during the time of Neubauer's study. It is true that informed consent, in the absence of the codified federal regulation, was not as well developed and documented in the 1960's as it is now. However, the Nuremberg Code, developed in 1947 and formalized into research policy soon after, notes that “the voluntary consent of the human subject is absolutely essential.”20 For minors, permission is provided by the parent or legal guardian. After enactment of the 384-procedure, the guardian in this case was LWS. Records indicate that psychological study began during foster care while infants waited for adoption placement, at which time research participation consent and separation permission was given by LWS.21 Based on this clear conflict of interest, it is more accurate to say that consent was not absent but immoral.

Oppenheim might dismiss the above as irrelevant given her claim that LWS held no interest in the research. She asserts that LWS separated siblings into homes solely based on the advice of Columbia Professor and LWS Chief Psychiatrist Viola Bernard. However, our own research suggests LWS concerned itself with the success of Neubauer's study. A 1965 letter to Bernard from Florence G. Brown, executive director of LWS, contains the following quote: “I was very happy to learn that you did succeed in getting renewal of funds for the CDC-LWS [Child Development Center–Louise Wise Services] study. I do hope that the other agencies will participate so that the sample can be large enough.”22 If Oppenheim is correct that that LWS did not concern itself with the research, then why should the agency's executive director discuss the study's sample size? Further, why should Brown refer to the “CDC-LWS study,” an implication of joint participation?

Given the agency's involvement in the Twins Study, especially in regard to sample size, it is not unreasonable to suggest that LWS's practice of twin separation was at least perpetuated by Neubauer's study—the agency's vested interest in the research reveals conflicts of interest that render its actions unethical.

We argue that Oppenheim's writing is lacking in its review of sources and ethical analysis of Neubauer's work. Further, we believe that the Twins Study perpetuated the separation of siblings, coerced families into participation in research, and willfully withheld family information. The author, unwittingly, does a further disservice to biological mothers and adoptive parents by insinuating that they, rather than Neubauer or LWS, allowed for twin separation.

Our review of Oppenheim's commentary demonstrates the need for redress on the part of study organizers but further access to study documents is required to achieve this goal. As a start, access to study materials must be offered to participants before the year 2065. Many questions remain about the method of study design that passed through institutions undetected for decades, as well as the full extent of harm imposed upon participants, families, and even non-identical siblings placed by LWS. Until the full scope of Neubauer's work is understood, bioethicists and policy makers alike cannot ensure corrective action on behalf of participants or the prevention of further research harms. To avert future missteps, academics and policy makers alike should join our call for continued introspection, access and analysis of Neubauer's research.