The National Institutes of Health’s proposal to strike two words from the agency’s mission statement has alarmed a bipartisan pair of senators who are concerned the change could affect physician attitudes toward people with disabilities.
In a letter sent to NIH Director Dr. Monica Bertagnolli on Wednesday, Sens. Marco Rubio (R-FL) and Tammy Duckworth (D-IL) asked for an explanation for the NIH’s revised mission statement that removes the words “lengthen life.”
In its current form, the NIH says its missions is to “seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.”
“We write to express concern about the potential effects of this change and to request information as to why this change was made,” Rubio and Duckworth said in the letter.
"Amid the rising openness of some countries, such as Canada and the Netherlands, as well as a handful of states toward physician-assisted suicide, we are concerned that eliminating the stated goal of lengthening life within the NIH’s mission statement without explanation or justification could have a negative impact on people’s existing attitudes towards the quality of life of people with disabilities," the continued. "People with disabilities deserve to be treated with the same dignity and respect as non-disabled people, but stereotypes and bias in the research and healthcare sectors continue to prevent people with disabilities from getting the care they need, when they need it. One survey found that over 80 percent of U.S. physicians who responded said they believe people with a significant disability have a worse quality of life than nondisabled people. Evidence suggests this could lead to discrimination in how doctors recommend physician-assisted suicide. With such pervasive, harmful views impacting so many Americans, it is imperative that the mission of the nation’s biggest funder of biomedical research be crystal clear."
The two senators asked for the motivation behind the proposed change, whether outside groups were involved in the decision-making process, and what effect the removal of the two words will have on NIH’s work.
On Aug. 25, NIH opened a public comment period on the proposed mission statement, which reads, "To seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people." While the statement has not been finalized, the public comment period closed Nov. 24.
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