Is There a Blind Spot in the Oversight of Human Subject Research?

Is There a Blind Spot in the Oversight of Human Subject Research?

A scientist examining samples.

(© lily/Fotolia)


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Jonathan Kimmelman
Jonathan Kimmelman, PhD, is Professor of Biomedical Ethics / Social Studies of Medicine at McGill University. His research centers on ethical, policy, and scientific dimensions of drug and diagnostics development, and he founded and directs the Studies of Translation, Ethics and Medicine (STREAM). In addition to his book, Gene Transfer and the Ethics of First-in-Human Experiments (Cambridge Press, 2010), major publications have appeared in Science, JAMA, BMJ, and Hastings Center Report. Kimmelman received the Maud Menten New Investigator Prize (2006), a CIHR New Investigator Award (2008), a Humboldt Bessel Award (2014), and is an Elected Fellow of the Hastings Center (2018). He has served on various advisory bodies within the National Heart Lung and Blood Institute, the U.S. National Academies of Medicine, and the Canadian Institutes for Health Research, and makes frequent appearances in the news media. He chaired the International Society of Stem Cell Research Guidelines for Stem Cell Research and Clinical Translation revision task force 2015-16, is deputy editor at Clinical Trials, and serves as an associate editor at PLoS Biology.
This man spent over 70 years in an iron lung. What he was able to accomplish is amazing.

Paul Alexander spent more than 70 years confined to an iron lung after a polio infection left him paralyzed at age 6. Here, Alexander uses a mirror attached to the top of his iron lung to view his surroundings.

Allison Smith / The Guardian

It’s a sight we don’t normally see these days: A man lying prone in a big, metal tube with his head sticking out of one end. But it wasn’t so long ago that this sight was unfortunately much more common.

In the first half of the 20th century, tens of thousands of people each year were infected by polio—a highly contagious virus that attacks nerves in the spinal cord and brainstem. Many people survived polio, but a small percentage of people who did were left permanently paralyzed from the virus, requiring support to help them breathe. This support, known as an “iron lung,” manually pulled oxygen in and out of a person’s lungs by changing the pressure inside the machine.

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Sarah Watts

Sarah Watts is a health and science writer based in Chicago.

When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.

Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.

LGS Foundation

Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.

“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.

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Sarah Watts

Sarah Watts is a health and science writer based in Chicago.