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NIH hesitates on disability goal but takes on diversity critics

Top US research funding agency, while unsure about proposed change to mission statement, swings back at partisan attempts to limit an equity-focused agenda

Published on
June 14, 2024
Last updated
June 14, 2024
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The US National Institutes of Health is reconsidering a plan to boost disabled people in its mission statement, part of a rising political challenge as partisanship over social equity hits the world鈥檚 top funder of biomedical science.

The NIH聽聽last August, saying that the wording of the institution鈥檚聽聽鈥 listing 鈥渞educe illness and disability鈥 among its goals 鈥 鈥渃ould be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be fixed鈥.

But the agency鈥檚 director, Monica Bertagnolli, has now told her advisory board that the NIH received nearly 500 comments on the idea, with about 40 per cent of them urging it to retain the goal of reducing human disability.

鈥淲e were a little bit surprised,鈥 Dr Bertagnolli confessed to the semi-annual gathering of the NIH鈥檚 advisory committee to the director, promising the panel of medical experts that the NIH would now arrange direct meetings with disability advocates to hear their perspectives more clearly.

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The mission statement itself may ultimately become a sideshow because it聽has no聽direct effect on allocating the $48 billion (拢38 billion) that the NIH gets annually from the federal government to spend on health-related research in academia and beyond.

But Dr Bertagnolli 鈥撀still less than a year in office, after聽the record tenure of Francis Collins聽鈥 has been outspoken about trying to pay聽much greater attention to society鈥檚 disadvantaged, and is now attracting some of the same caustic political blowback that鈥檚 been tearing through much of the nation鈥檚 academic research community.

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Alongside criticism around the mission statement issue, Republican leaders have begun pressing the NIH about reports engineered by activists that the agency requires universities to obtain 鈥渄iversity statements鈥 鈥 written pledges to pursue equity 鈥 from scientists working with its grant money.

Senator Bill Cassidy, the top-ranking Republican on the Senate committee in charge of health and education issues,聽has聽written to Dr Bertagnolli聽.

Dr Cassidy, a gastroenterologist, told Dr Bertagnolli that he supports diversity in biomedical research. 鈥淗owever, allowing schools to use taxpayer dollars to support the adoption of 鈥榳oke鈥 hiring criteria pushed by progressive political activists goes far beyond bipartisan congressional intent,鈥 he told the NIH director.

Dr Bertagnolli and the NIH are confronting the challenge in the immediate aftermath of Harvard University and the Massachusetts Institute of Technology, under similar pressure from Republican lawmakers, both announcing that they will no longer require diversity statements from their faculty job applicants.

Without directly addressing the Cassidy complaint, Dr Bertagnolli joined NIH officials and members of her advisory board in making clear that partisan sniping would not stop the NIH paying much better attention to聽聽鈥 including racial minorities, women, and the LGBTQ community 鈥 that have been historically overlooked in NIH research prioritisation.

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Diana Bianchi, director of the NIH鈥檚 National Institute of Child Health and Human Development, called on scientists to study the 鈥渟pectrum of reproductive health,鈥 with a view toward 鈥渨hat set of organs were you born with 鈥 and that鈥檚 a separate discussion from how you identify socially鈥.

鈥淎ll of our language, particularly around maternal health, has now gone from 鈥榩regnant women鈥 to 鈥榩regnant people鈥 or 鈥榩regnant individuals鈥 to reflect the fact that we acknowledge that not everybody who identifies as a woman is having a child,鈥 Dr Bianchi said.

One of the NIH panel鈥檚 expert advisers, Giselle Corbie, professor of social medicine at the University of North Carolina at Chapel Hill, bemoaned the 鈥渉einous mortality rate鈥 among 鈥渢rans women of colour鈥. She said researchers should 鈥渘ot be swayed by the forces that are outside of our scientific community that are asking us to mute the importance of this, in this population鈥.

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Dr Bertagnolli called her defence of transgender women a 鈥渨onderful comment鈥, and said medical professionals must help patients 鈥渂y engaging with them 鈥 so we have to meet them where they are鈥.

鈥淚t鈥檚 kind of irrelevant what any of us think,鈥 the NIH leader said. 鈥淚t鈥檚 about who we鈥檙e here to serve, and we鈥檙e here to serve everybody.鈥

Dr Bertagnolli followed up the NIH鈥檚 mission statement proposal last year with a more unambiguous benefit for people with disabilities, designating them as a 鈥渉ealth disparity population鈥, thereby clearing the way for additional NIH-funded research into matters affecting them.

Dr Bertagnolli said she could not explain the opposition now arising over the mission statement. 鈥淭here could be a lot of reasons why,鈥 she told her advisory panel. 鈥淪ome of them could be just not understanding, but I think we鈥檒l find out by a deeper dive 鈥 that鈥檚 why we鈥檝e completely delayed this.鈥

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But two US senators, one from each party, have聽. The Republican, Marco Rubio, and the Democrat, Tammy Duckworth 鈥 a double amputee from her US Army service in Iraq 鈥 wrote to Dr Bertagnolli earlier this year complaining that the NIH鈥檚 proposed wording change also eliminated the stated goal of lengthening life, which the senators described as carrying negative implications for people with disabilities.

paul.basken@timeshighereducation.com

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