NIH hesitates on disability goal but takes on diversity critics

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’s top funder of biomedical science.

The NIH suggested the idea last August, saying that the wording of the institution’s current official purpose – listing “reduce illness and disability” among its goals – “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be fixed”.

But the agency’s 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.

“We were a little bit surprised,” Dr Bertagnolli confessed to the semi-annual gathering of the NIH’s 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.

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

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

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 “diversity statements” – written pledges to pursue equity – 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, has written to Dr Bertagnolli asking for an explanation.

Dr Cassidy, a gastroenterologist, told Dr Bertagnolli that he supports diversity in biomedical research. “However, allowing schools to use taxpayer dollars to support the adoption of ‘woke’ hiring criteria pushed by progressive political activists goes far beyond bipartisan congressional intent,” 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 segments of the population – including racial minorities, women, and the LGBTQ community – that have been historically overlooked in NIH research prioritisation.

Diana Bianchi, director of the NIH’s National Institute of Child Health and Human Development, called on scientists to study the “spectrum of reproductive health,” with a view toward “what set of organs were you born with – and that’s a separate discussion from how you identify socially”.

“All of our language, particularly around maternal health, has now gone from ‘pregnant women’ to ‘pregnant people’ or ‘pregnant individuals’ to reflect the fact that we acknowledge that not everybody who identifies as a woman is having a child,” Dr Bianchi said.

One of the NIH panel’s expert advisers, Giselle Corbie, professor of social medicine at the University of North Carolina at Chapel Hill, bemoaned the “heinous mortality rate” among “trans women of colour”. She said researchers should “not 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”.

Dr Bertagnolli called her defence of transgender women a “wonderful comment”, and said medical professionals must help patients “by engaging with them – so we have to meet them where they are”.

“It’s kind of irrelevant what any of us think,” the NIH leader said. “It’s about who we’re here to serve, and we’re here to serve everybody.”

Dr Bertagnolli followed up the NIH’s mission statement proposal last year with a more unambiguous benefit for people with disabilities, designating them as a “health disparity population”, 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. “There could be a lot of reasons why,” she told her advisory panel. “Some of them could be just not understanding, but I think we’ll find out by a deeper dive – that’s why we’ve completely delayed this.”

But two US senators, one from each party, have offered their reasons. The Republican, Marco Rubio, and the Democrat, Tammy Duckworth – a double amputee from her US Army service in Iraq – wrote to Dr Bertagnolli earlier this year complaining that the NIH’s 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