{"id":3824,"date":"2020-05-11T21:45:00","date_gmt":"2020-05-11T20:45:00","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-ethics\/?p=3824"},"modified":"2020-05-11T21:45:00","modified_gmt":"2020-05-11T20:45:00","slug":"experiment-on-identical-siblings-separated-at-birth-ethical-implications-for-researchers-universities-and-archives-today","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-ethics\/2020\/05\/11\/experiment-on-identical-siblings-separated-at-birth-ethical-implications-for-researchers-universities-and-archives-today\/","title":{"rendered":"Experiment on identical siblings separated at birth:  Ethical implications for researchers, universities and archives today"},"content":{"rendered":"<p><strong>\u00a0<\/strong>By Adam Kelmenson, MS &amp; Robert Klitzman, MD<\/p>\n<p>&nbsp;<\/p>\n<p>The 2018 film <em>Three Identical Strangers <\/em>brought wide media and public attention to a previously little-known 1960\u2019s psychological study.\u00a0 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\u2019s true purpose or the existence of siblings.<\/p>\n<p>This \u2018Twins Study\u2019 took place when bioethics regulations were less well codified, but it raises critical and ongoing concerns. \u00a0Much 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.\u00a0 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.<\/p>\n<p>More information is required to develop a complete picture of the study\u2019s transgressions, but, based on our research thus far on the study, our primary criticisms rest on the project\u2019s 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.\u00a0 As a result, the study not only posed risks to participants, but failed to yield results, diminishing gains that might offset those risks.<\/p>\n<p>We also seek to further the discussion surrounding the study by probing the ongoing harms caused by continued suppression of research documents. \u00a0While the original study was ethically problematic, surviving participants still have limited access to key documents and facts.\u00a0 The study sheds light on the conflicts of interest in archival practices and lack of oversight covering researchers\u2019 gifts of records to libraries, as a result of which the Twins Study continues to generate ethical problems and harm.<\/p>\n<p>Over the past few decades biomedical research has burgeoned, with investigators collecting medical and personal data and creating biobanks and DNA databases.\u00a0 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\u2019 access. \u00a0The Twins Study serves as a notable case in point to examine and improve current archive practices, especially governance and guidelines of researchers\u2019 donations to university libraries.<\/p>\n<p>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.\u00a0 Specifically, university libraries might seek to attract noteworthy archival donations that advance the library\u2019s and university\u2019s prestige, while ignoring study participants\u2019 ethical rights.\u00a0 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.<\/p>\n<p>Library storage practices have received little, if any, attention from IRBs or bioethicists, but can still impede and\/or violate participants\u2019 rights.\u00a0 We call on IRBs, scholars, libraries and universities to review document storage policies and practices for new and past gifts. \u00a0We 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.\u00a0 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. \u00a0Impediments to study subjects\u2019 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. \u00a0The Twins Study, though conducted in the past, still has important implications for today and the future.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Paper title:<\/strong> <a href=\"https:\/\/jme.bmj.com\/content\/early\/2020\/05\/04\/medethics-2019-105983\">The Experiment on Identical Siblings Separated at Birth:\u00a0 Ethical Implications for Researchers, Universities and Archives Today<\/a><\/p>\n<p><strong>Authors:<\/strong> Adam Kelmenson, MS (Chinese University of Hong Kong) &amp; Robert Klitzman, MD (Columbia University)<\/p>\n<p><strong>Affiliations:<\/strong> Chinese University of Hong Kong and Columbia University<\/p>\n<p><strong>Competing interests:<\/strong> The authors have no competing interests<\/p>\n<p><strong>Social media: <\/strong>twitter:\u00a0 @CU_Bioethics, @RobertKlitzman<\/p>\n<p>&nbsp;<!--TrendMD v2.4.8--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u00a0By Adam Kelmenson, MS &amp; Robert Klitzman, MD &nbsp; The 2018 film Three Identical Strangers brought wide media and public attention to a previously little-known 1960\u2019s psychological study.\u00a0 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 [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2020\/05\/11\/experiment-on-identical-siblings-separated-at-birth-ethical-implications-for-researchers-universities-and-archives-today\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":353,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[397],"tags":[],"class_list":["post-3824","post","type-post","status-publish","format-standard","hentry","category-research-ethics"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Experiment on identical siblings separated at birth: Ethical implications for researchers, universities and archives today - Journal of Medical Ethics blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/medical-ethics\/2020\/05\/11\/experiment-on-identical-siblings-separated-at-birth-ethical-implications-for-researchers-universities-and-archives-today\/\" \/>\n<meta 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