CorrespondenceTitle: An oversight regarding the Club cell?To the Editor,I was surprised to a see a title including the outdated term “Clara Cell” protein, in reference to CC16, in the title and body of the article by Rallis et al recently published in Pediatric Pulmonology (1). It appears that there needs to be an ongoing reminder that due to the association of Dr. Max Clara with the Third Reich and his unethical medical research practices which lead to the identification of this cell type (2-4) that his name was removed in 2013.In 2012, Editorial boards of American Thoracic Society, the European Respiratory Society and the American College of Chest Physicians, based on recommendations from an expert panel assembled by the Forum of International Respiratory Societies, agreed to convert to use of the terms “club cell (Clara)” and “club cell secretory protein (Clara), and after January 1, 2013, completely transitioning out the use of the (Clara) eponym.In our day, where cancel culture is so predominant, questions have been raised about what lessons are lost when history is erased. Assuming an oversight was made by the authors, editors and reviewers in not utilizing the now accepted terms “Club cell secretory protein” or bronchiolar exocrine cells, it would only be acceptable to mention the prior term in the setting of an asterisked description explaining the context and involvement of concentration camp prisoners and their association with the prior eponym, for educational purposes.Rallis D, Baltogianni M, Dermitzaki N, Balomenou F, Papastergiou E, Maragoudaki E, Tsabouri S, Makis A, Giapros V. Clara cell protein expression amongst infants with respiratory distress syndrome. Pediatr Pulmonol. 2022 Mar 18.Woywodt A, Lefrak S, Matteson E. Tainted eponyms in medicine: the ”Clara” cell joins the list. Eur Respir J. 2010 Oct;36(4):706-8Winkelmann A, Noack T. The Clara cell: a ”Third Reich eponym”? Eur Respir J. 2010 Oct;36(4):722-7.Irwin RS, Augustyn N, French CT, Rice J, Tedeschi V, Welch SJ; Editorial Leadership Team. Spread the word about the journal in 2013: from citation manipulation to invalidation of patient-reported outcomes measures to renaming the Clara cell to new journal features. Chest. 2013 Jan;143(1):1-4.
Introduction A risk associated with cystic fibrosis newborn screening (CFNBS) is parental misunderstanding of genetic information generated by the over 6,600 positive screens reported annually in the US. CFNBS algorithms incorporating DNA analysis can generate genetic information that requires clinical interpretation and has significance for the newborn, parents, and other relatives. Engagement between CF care centers and trained genetic counseling providers, such as licensed and/or certified genetic counselors (GCs), is variable and limited in providing information to CFNBS positive (CFNBS+) families. Methods Using a modified Delphi process, a workgroup of CF experts developed recommendations for engagement of genetic counseling services in CF care centers where CFNBS+ diagnostic evaluations are performed. Statements were assessed over three rounds of surveys, one face-to-face meeting, and through public feedback. Results Seventeen statements achieved >80% consensus (range: 82-100%). The workgroup affirmed prior CFF policy statements recommending genetic counseling for parents of infants with CFNBS+. The remaining statements addressed infrastructure and logistics of genetic counseling services, including defining appropriate training for genetic counseling providers and counseling content, establishing a path to equal access to genetic counseling providers across CF care centers, and setting a standard for client-centered CFNBS genetic counseling that is respectful of diverse patient needs and autonomy. Conclusions Implementation of client-centered genetic counseling for CFNBS+ families in CF care centers by providers with expertise in both CF and genetic counseling will require efforts to further define core concepts, enhance education of providers, and develop opportunities for access via telemedicine.