The Trump administration would forbid using the terms “vulnerable,” “entitlement,” “diversity,” “transgender,” “fetus,” “evidence-based,” and “science-based” in 2018 budget documents from the Centers for Disease Control and Prevention (CDC). The original story is here. This is not the first attempt to muzzle an agency, but it is the first affecting one with which the blood community works very closely.
As protest builds in social and mainstream media, and the reported ban is being “walked back”, we are adding our voices to the National Academies and many others. The administration’s appointee to run CDC, Brenda Fitzgerald MD, said in a tweet, “there are no banned words at CDC.” The restrictions are now being characterized as recommendations reflecting political and ideological reality in Congress.
Individuals may oppose or support the priorities of the administration for many reasons, but on this issue, we should speak as one. Research deserves support when the subject is important, the hypotheses are credible, and the methods rigorous—period. Do “civilians” in the executive branch understand the argot of science, medicine, and public health? Is it possible that concepts like “evidence-based” and “science-based” are too arcane? The following has been offered to CDC as alternative language, “CDC bases its recommendations on science in consideration with community standards and wishes.” This is apparently clearer to someone, but community standards and wishes are neither evidence nor science, the advancement of which is our responsibility. We recognize that the political priorities of decision makers are also in play, but, the latter accepted, who wins by censoring accurate, concise language in a budget proposal? It is not as if making the words “go away” will make an issue disappear.
Censorship of the language of scientists and other public servants at CDC can have a spectrum of outcomes. At best, it will result in increasingly opaque language to support the same funding requests that would have been proposed absent a ban. At worst, and many of us suspect the worst to be the truth, the intent is to stifle legitimate inquiry by signaling that certain research is “verboten.” We have already seen that from Congress as in 1996 when CDC was prohibited from funding studies of the epidemic of gun violence as a public health issue and from this administration regarding climate change and humanity’s role in it.
How would one apply for Zika research funding and not use the word “fetus,” when fetal injury is the driver of our response to this epidemic? Closer to home, we in the blood community are engaged in substantive discussions about appropriate approaches to the acceptance or deferral of men who have sex with men and transgender blood donors. If we want research on any risk posed to transfusion safety, how would we write a proposal without the word “transgender?” The crucial characteristic of patient blood management, with its many clinical advantages, is that it is “evidence-based.”
Without taking sides on a specific budget request or area of research, it is incumbent upon us, committed to free inquiry and transparency of governance, regardless of our location on a political spectrum, to condemn this and all such “Orwellian” diktats publicly and explicitly—and we do. Approach the White House and your Congressional delegation in principled, not partisan, opposition to censorship. ABC members can reach out to Washington conveniently using this link to our advocacy page.
This statement, drafted by ABC Chief Medical Officer, Louis Katz, MD, represents consensus among members of the America’s Blood Centers Scientific, Medical and Technical Committee. Comments may be submitted to the Newsletter.