Hide table of contents

It’s also dangerous to the health of thousands of trial participants

The path from the atrocities of Nuremberg and Tuskegee to today’s robust ethics of medical research has not been easy.

In response to these horrific events, a remarkable global consensus emerged, across countries in very different parts of the world and with very different types of governments: Medical researchers, and the institutions and companies who fund their work, are bound by a series of ethical obligations. These obligations are designed to protect and respect the interests of people who participate in their research. They include minimizing foreseeable harms to participants and keeping the promises that researchers make to study volunteers.  

While the fate of USAID remains murky, one thing absolutely is clear. The abrupt termination of critical USAID-funded clinical trials, with insufficient time to safeguard the welfare of people who are participating, is profoundly unethical and utterly inexcusable. Such actions threaten the health and lives of thousands of patients.

The stop-work orders affect research designed to answer important questions about HIV or TB treatments, where immediate withdrawal of drugs not only takes away what may be lifesaving treatments but also risks exacerbating or creating drug-resistant strains, leaving participants potentially worse off than if they had never joined the study and creating additional, unacceptable risks for others in the community.

The “pause” has also ensnared studies of experimental devices that, in accordance with scientific and ethics principles, require regular monitoring of participant well-being and opportunities to remove the device at an appropriate time. Telling a medical researcher they must abruptly abandon study participants is akin to telling a surgeon they cannot treat a patient who has a post-operative infection that resulted from a surgery they performed the week before. All medical ethics codes forbid this. And for obvious reason.

58

9
0
1

Reactions

9
0
1
Comments7


Sorted by Click to highlight new comments since:

I'm confused. The wording of the headline suggests that USAID is not conducting trials in-house, they are giving grants to other organizations that conduct trials. If that's the case, the only way this makes sense is if the researchers went ahead and started treating patients before the government's check hit their bank accounts - that the researchers started the experiment without having enough money already in their own bank accounts to safely wrap up their work with their already enrolled subjects. That can't be ethical, can it? For precisely this reason? Shouldn't the headline be grossly unethical conduct by government-funded researchers?

I'm assuming the grants are paid in installments. If a research organization has a contract with the government that says they will be paid a total of $X in Y installments over Z years, it seems completely normal that they would start the trial after receiving the first installment (indeed, it seems likely that the timeline in their grant proposal to USAID would have promised that they would do this).

That seems reasonable up to a certain point. It seems reasonable for long-term grants to be paid out on some schedule and for a researcher to arrange a study such that a loss of funding would force them to wrap up early and without the data they were hoping for. But I think a researcher should still have an obligation to have enough money in their own bank account that, if funding gets cut, they can wrap up the study in a way that is safe for the subjects - they should have enough cash to ween the subjects off drugs or remove devices early or whatever else is involved in wrapping up. Funding getting cut is a risk that I would think would be fairly obvious when planning a study - especially if your source of funding is a government agency in a country that you know will have an election before the study concludes.

This is a great question. For some of the trials it wasn’t an issue of the funding freeze but the abrupt and unprecedented “stop work order” issued by Secretary of State Marco Rubio (who is also acting Administrator of USAID). It was so immediate and sweeping that the research staff would have been violating it if they helped remove experimental devices (but some did anyway). Many of the trials were partnerships with U.S. drug companies who were testing products they hoped to sell to commercial markets overseas. It also affected a malaria vaccine trial at Oxford. 

The funding situation is similar to described above - multi year contracts/agreements with USAID which investigators/partners expected the government to honor. Many studies probably had contingency plans for early termination, but those would depend on  adequate warning (weeks if not months/years) to wind down activities.


Nothing like this has happened before and it will fundamentally change how the US government does business with companies - in sectors beyond health/aid. 

NYT has a great article on that goes into more detail - https://www.nytimes.com/2025/02/06/health/usaid-clinical-trials-funding-trump.html?smid=nytcore-ios-share&referringSource=articleShare

There is a word that educated liberals need to learn or relearn: evil.

Flagrant disregard for human life is evil.

The cruelty is heartbreaking.

See here (https://forum.effectivealtruism.org/posts/FTTPCtkizkAQ9fkvM/unicode-wvyp) for the Rapid Response Fund: https://www.founderspledge.com/funds/rapid-response-fund. It's an opportunity to donate to help mitigate the worst immediate consequences of the aid freeze.

Curated and popular this week
Sam Anschell
 ·  · 6m read
 · 
*Disclaimer* I am writing this post in a personal capacity; the opinions I express are my own and do not represent my employer. I think that more people and orgs (especially nonprofits) should consider negotiating the cost of sizable expenses. In my experience, there is usually nothing to lose by respectfully asking to pay less, and doing so can sometimes save thousands or tens of thousands of dollars per hour. This is because negotiating doesn’t take very much time[1], savings can persist across multiple years, and counterparties can be surprisingly generous with discounts. Here are a few examples of expenses that may be negotiable: For organizations * Software or news subscriptions * Of 35 corporate software and news providers I’ve negotiated with, 30 have been willing to provide discounts. These discounts range from 10% to 80%, with an average of around 40%. * Leases * A friend was able to negotiate a 22% reduction in the price per square foot on a corporate lease and secured a couple months of free rent. This led to >$480,000 in savings for their nonprofit. Other negotiable parameters include: * Square footage counted towards rent costs * Lease length * A tenant improvement allowance * Certain physical goods (e.g., smart TVs) * Buying in bulk can be a great lever for negotiating smaller items like covid tests, and can reduce costs by 50% or more. * Event/retreat venues (both venue price and smaller items like food and AV) * Hotel blocks * A quick email with the rates of comparable but more affordable hotel blocks can often save ~10%. * Professional service contracts with large for-profit firms (e.g., IT contracts, office internet coverage) * Insurance premiums (though I am less confident that this is negotiable) For many products and services, a nonprofit can qualify for a discount simply by providing their IRS determination letter or getting verified on platforms like TechSoup. In my experience, most vendors and companies
 ·  · 4m read
 · 
Forethought[1] is a new AI macrostrategy research group cofounded by Max Dalton, Will MacAskill, Tom Davidson, and Amrit Sidhu-Brar. We are trying to figure out how to navigate the (potentially rapid) transition to a world with superintelligent AI systems. We aim to tackle the most important questions we can find, unrestricted by the current Overton window. More details on our website. Why we exist We think that AGI might come soon (say, modal timelines to mostly-automated AI R&D in the next 2-8 years), and might significantly accelerate technological progress, leading to many different challenges. We don’t yet have a good understanding of what this change might look like or how to navigate it. Society is not prepared. Moreover, we want the world to not just avoid catastrophe: we want to reach a really great future. We think about what this might be like (incorporating moral uncertainty), and what we can do, now, to build towards a good future. Like all projects, this started out with a plethora of Google docs. We ran a series of seminars to explore the ideas further, and that cascaded into an organization. This area of work feels to us like the early days of EA: we’re exploring unusual, neglected ideas, and finding research progress surprisingly tractable. And while we start out with (literally) galaxy-brained schemes, they often ground out into fairly specific and concrete ideas about what should happen next. Of course, we’re bringing principles like scope sensitivity, impartiality, etc to our thinking, and we think that these issues urgently need more morally dedicated and thoughtful people working on them. Research Research agendas We are currently pursuing the following perspectives: * Preparing for the intelligence explosion: If AI drives explosive growth there will be an enormous number of challenges we have to face. In addition to misalignment risk and biorisk, this potentially includes: how to govern the development of new weapons of mass destr
Dr Kassim
 ·  · 4m read
 · 
Hey everyone, I’ve been going through the EA Introductory Program, and I have to admit some of these ideas make sense, but others leave me with more questions than answers. I’m trying to wrap my head around certain core EA principles, and the more I think about them, the more I wonder: Am I misunderstanding, or are there blind spots in EA’s approach? I’d really love to hear what others think. Maybe you can help me clarify some of my doubts. Or maybe you share the same reservations? Let’s talk. Cause Prioritization. Does It Ignore Political and Social Reality? EA focuses on doing the most good per dollar, which makes sense in theory. But does it hold up when you apply it to real world contexts especially in countries like Uganda? Take malaria prevention. It’s a top EA cause because it’s highly cost effective $5,000 can save a life through bed nets (GiveWell, 2023). But what happens when government corruption or instability disrupts these programs? The Global Fund scandal in Uganda saw $1.6 million in malaria aid mismanaged (Global Fund Audit Report, 2016). If money isn’t reaching the people it’s meant to help, is it really the best use of resources? And what about leadership changes? Policies shift unpredictably here. A national animal welfare initiative I supported lost momentum when political priorities changed. How does EA factor in these uncertainties when prioritizing causes? It feels like EA assumes a stable world where money always achieves the intended impact. But what if that’s not the world we live in? Long termism. A Luxury When the Present Is in Crisis? I get why long termists argue that future people matter. But should we really prioritize them over people suffering today? Long termism tells us that existential risks like AI could wipe out trillions of future lives. But in Uganda, we’re losing lives now—1,500+ die from rabies annually (WHO, 2021), and 41% of children suffer from stunting due to malnutrition (UNICEF, 2022). These are preventable d
Recent opportunities in Global health & development
16
Eva
· · 1m read