'Utterly ethically unacceptable': Expert bashes 'abrupt dismantling' of healthcare program

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19 February

U.S. President Donald Trump holds a signed executive order on AI, in the Oval Office of the White House, in Washington, U.S., January 23, 2025.

We speak to bioethicist Ruth Faden about the Trump administration’s abrupt shutdown of USAID-funded clinical trials, ending access to critical healthcare and putting patients at serious risk. “We’re in a situation in which we’re going to leave people abandoned. And that’s utterly ethically unacceptable,” says Faden.

This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This is Democracy Now!, democracynow.org. I want to turn to Dr. Ruth Faden in Washington, D.C., the founder of the Berman Institute of Bioethics, biomedical ethics professor at Johns Hopkins University. From 1994 to 1996, she served as chair of the National Advisory Committee on Human Radiation Experiments, established by President Clinton. She’s just co-authored a new piece in STAT headlined “The abrupt end of USAID-funded clinical trials is profoundly unethical.”

In it, she writes, “The path from the atrocities of Nuremberg and Tuskegee to today’s robust ethics of medical research has not been easy.”

She continues, quote, “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,” Dr. Faden and Dr. Nancy Kass write.

Dr. Faden, welcome to Democracy Now! If you can explain exactly what you mean? Whatever happens with USAID, what about these medical subjects, people around the world? Explain what clinical trials are and what it means for the doctors and the researchers to get a stop-work order, that means they cannot get their medicine or have some medical device removed or put in at the moment that it is supposed to happen.

RUTH FADEN: Thank you, Amy. And I’m going to do my best to unpack this issue for everybody listening. You’ve already sort of expressed much of the general concern, so let me try to make it more granular.

When people are asked to participate in a clinical trial — and this is true anywhere in the world, and it is certainly true of USAID-funded research — two things happen. First, there is assurance, to the people who are thinking about whether or not to participate, that their interests are going to come first, that people are going to make sure, the clinicians, the nurses that are running the trials, that they’ll do their very best not to harm participants. And the other is that we’re going to keep our promises to you. You’re going to take on some risk by participating in a clinical trial, that will ostensibly benefit many other people, as well as potentially yourself, and in exchange for your taking on that risk, we’re going to do everything we can to protect your interests. Now, that’s the background sort of ethical playing field in which research with human subjects is acceptable.

When you have a sudden, abrupt cessation of work on a clinical trial, you blow all of that out of the water. Why is that? When a person is participating in clinical research — imagine yourself in a cancer clinical trial — I’m thinking about your conversation with Angus just a minute ago — it is often the case that that clinical trial is giving you your cancer treatment. It’s the only way you’re getting medical care, through that clinical trial. Now, if that clinical trial is, on a dime, stopped, what happens to you? Where do you go? What does that mean? Similarly, if you’re in a clinical trial that’s testing out, I don’t know, a new device to prevent HIV transmission or a new device to deal with heart arrhythmias, and you’re going regularly — it’s an experimental device, and you’re going every two weeks or every three weeks to be monitored, to make sure that your health is still OK — now all of a sudden there’s a work-stop order, and you’ve got an experimental device implanted on your body — in your body, you can’t take it out on your own. Now what happens? What this sudden, abrupt dismantling — and it’s a mess. We don’t know what’s going to happen with USAID in the end, right? What it has resulted in is, for the first time in a very long time, research funded and conducted by Americans — we’re in a situation in which we’re going to leave people abandoned. And that’s utterly ethically unacceptable.

AMY GOODMAN: Dr. Ruth Faden, we’re going to come back to you at another time to talk about everything from Tuskegee to Nuremberg, to talk about the implications of this. But I want to thank you right now for giving us a preview of what we are looking at in this country and around the world. Dr. Ruth Faden is founder of the Berman Institute of Bioethics, biomedical ethics professor at Johns Hopkins University. We’ll link to her piece, “The abrupt end of USAID-funded clinical trials is profoundly unethical.”

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