By Adam Kelmenson, MS & Robert Klitzman, MD
The 2018 film Three Identical Strangers brought wide media and public attention to a previously little-known 1960’s psychological study. The researchers had secretly separated several sets of twins and one set of triplets into adoptive families, and then studied them for decades without disclosing to the subjects the experiment’s true purpose or the existence of siblings.
This ‘Twins Study’ took place when bioethics regulations were less well codified, but it raises critical and ongoing concerns. Much of the material concerning the study, including the methods, data, numbers of participants, and manuscript drafts are held without access at Yale and Columbia Universities, as well as Spence-Chapin Adoption Agency. Our article in JME draws on publicly available documents, as well as personal communications with key stakeholders to summarize the facts of the case and illuminate specific ethical violations that harmed participants.
More information is required to develop a complete picture of the study’s transgressions, but, based on our research thus far on the study, our primary criticisms rest on the project’s lack of informed consent, coercion of adoptive parents, cooption of adoption practices for research rather than child protection, and failures to either publish results or make data available. As a result, the study not only posed risks to participants, but failed to yield results, diminishing gains that might offset those risks.
We also seek to further the discussion surrounding the study by probing the ongoing harms caused by continued suppression of research documents. While the original study was ethically problematic, surviving participants still have limited access to key documents and facts. The study sheds light on the conflicts of interest in archival practices and lack of oversight covering researchers’ gifts of records to libraries, as a result of which the Twins Study continues to generate ethical problems and harm.
Over the past few decades biomedical research has burgeoned, with investigators collecting medical and personal data and creating biobanks and DNA databases. Many of these researchers may want to donate these records and archives to university libraries upon their retirement or death, making attention to archival practices increasingly important to prevent future missteps in participants’ access. The Twins Study serves as a notable case in point to examine and improve current archive practices, especially governance and guidelines of researchers’ donations to university libraries.
The Twins Study elucidates how researchers, universities, research organizations, and archives have potential conflicts of interest that can hinder ethical conduct when participants, ethicists, and policy makers try to access information. Specifically, university libraries might seek to attract noteworthy archival donations that advance the library’s and university’s prestige, while ignoring study participants’ ethical rights. Researchers might choose to suppress participant or other access as a condition of donation, in order to avoid near-term public criticism, ire, or lawsuits for any questionable ethical research practices.
Library storage practices have received little, if any, attention from IRBs or bioethicists, but can still impede and/or violate participants’ rights. We call on IRBs, scholars, libraries and universities to review document storage policies and practices for new and past gifts. We also suggest that IRBs consider data donation practices at the onset of research projects to avoid future ethical problems and help guide appropriate storage practices and processes. Universities and ethicists should evaluate archival guidelines on an on-going basis to keep pace with changing research and data storage landscapes, altering any problematic practices. Impediments to study subjects’ research records about themselves not only brings about a second ethical blow to these participants, but also diminishes trust in investigators and universities that can otherwise help advance science. The Twins Study, though conducted in the past, still has important implications for today and the future.
Authors: Adam Kelmenson, MS (Chinese University of Hong Kong) & Robert Klitzman, MD (Columbia University)
Affiliations: Chinese University of Hong Kong and Columbia University
Competing interests: The authors have no competing interests
Social media: twitter: @CU_Bioethics, @RobertKlitzman