Virologist Treats Own Breast Cancer: Is Self-Experimentation Ethical?

This transcript has been edited for clarity.

Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at NYU Grossman School of Medicine. 

A recent report in the journal Nature raised a really interesting research ethics question that generated an analysis of, let’s say, an intervention that was tried by a scientist to deal with her breast cancer. It was accompanied by some discussion about the effects of whether it's right to experiment on yourself.

I think this has been a little bit misunderstood, but let me explain first what the scientist, Beata Halassy, who is at the University of Zagreb in Croatia, actually did. She discovered that she had breast cancer, or was diagnosed with breast cancer, in 2020. She had a mastectomy, but the cancer recurred at the site. 

She's a virologist, and she knew that there is work going on, in many places, to use viruses to infect tumors to try to kill them. As a virologist herself, she decided that she didn't want to go through another round of chemo and that she would try to brew up an oncovirus, as it's called, to treat the tumor.

The report, which was outlined in a journal called Vaccines, basically said she self-administered this and has revealed that she has been cancer free for 4 years. 

Discussion broke out about two different topics: whether it is right to experiment on yourself, and whether it is right to publish the resulting report in any journal. What's interesting here is that I don't think the discussion that I've read about this is adequate or correct about the answers to either of those questions. 

First, self-experimentation is something a little different from what she did. People self-experiment. The classic case is Werner Forssmann, a German physician, in 1929. He thought catheterization of the heart was something that was safe. At the time, many people felt that you couldn't touch the heart or put anything near the heart because it would make you die. He gave himself a little anesthesia in 1929 in his lab, and inserted a catheter in his arm and winded it all the way to his heart.

That's self-experimentation. You're doing that to demonstrate that something is feasible. You're doing it to generate knowledge. He didn't have a medical condition. He was trying to show that something could be done, and that something very important and useful could be done. 

There are also cases of self-experimentation where somebody may say, “I'm going to expose myself to a dangerous substance to show that it still might have curative powers.” We have had, in the history of medicine, people who drink bacteria to show what might be the cause of gastric ulcers. There are many other situations where people who aren't suffering from an ailment or a disease expose themselves to something in order to generate new knowledge. 

That's not what happened to our science friend in Croatia. She wanted to knock off the recurrence of her cancer. She wasn't trying to experiment to learn about anything; she was trying to save her own life. I don't think this is actually well described as self-experimentation. I think it's described as a desperate attempt to prevent the reoccurrence of a cancer that might kill you, to save yourself.

That leads to the recognition that that's not something that you have reviewed by research ethics committees. There's no protocol here. She's not in need of declaring her conflicts of interest while undertaking this because no one is funding her. This is a one-off, desperate effort to try to prevent disease.

I don't think there's any question that it's ethical to do it. If she knows enough about how to try it and is willing to assume the risks of doing it, not only don't I think it's wrong to do it, but I'm not even sure how you could prevent it, even if you felt it was wrong. People with special knowledge and access to special agents are going to be able to try things like this.

Do we publish them? Obviously, from where I'm coming, this is a self-case report. It's just like any other case report of something that's interesting to follow, and I don't see any big controversy about publishing it. It doesn't prove that it would work for others. It doesn't prove that even if she's 4 years cancer free, it's something that we ought to shift to, or that the way she brewed up her viruses to kill her tumor is the best way to do it. 

It's interesting and it might encourage more work or more lines of inquiry — real research. That's what case reports do. I don't think journals have to hesitate in publishing them because they worry that it's not adequately reviewed or it's going to get someone in trouble with research ethics committees. I think that's misconceived. 

I hope this worked for her. I do think she was in a special position to try something that might benefit her. The idea that what she did is somehow experimentation or research is just a confusion about what research is and what research ethics requires, which is something that didn't apply to her.

I'm Art Caplan, at the Division of Medical Ethics at NYU Grossman School of Medicine. Thank you for watching.