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.
New implants let paraplegics surf the web and play computer games

Rodney Gorham, an Australian living with ALS, has reconnected with the world, thanks to a brain-machine interface called the Stentrode.

Rodeny Dekker

When I greeted Rodney Gorham, age 63, in an online chat session, he replied within seconds: “My pleasure.”

“Are you moving parts of your body as you type?” I asked.

This time, his response came about five minutes later: “I position the cursor with the eye tracking and select the same with moving my ankles.” Gorham, a former sales representative from Melbourne, Australia, living with amyotrophic lateral sclerosis, or ALS, a rare form of Lou Gehrig’s disease that impairs the brain’s nerve cells and the spinal cord, limiting the ability to move. ALS essentially “locks” a person inside their own body. Gorham is conversing with me by typing with his mind only–no fingers in between his brain and his computer.

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Stav Dimitropoulos
Stav Dimitropoulos's features have appeared in major outlets such as the BBC, National Geographic, Scientific American, Nature, Popular Mechanics, Science, Runner’s World, and more. Follow her on Facebook or Twitter @TheyCallMeStav.
Leading XPRIZE Healthspan and Beating Negativity with Dr. Peter Diamandis

XPRIZE founder and chairman Peter Diamandis launches XPRIZE Healthspan at an event on November 29.

Hevolution Foundation

A new competition by the XPRIZE Foundation is offering $101 million to researchers who discover therapies that give a boost to people aged 65-80 so their bodies perform more like when they were middle-aged.

For today’s podcast episode, I talked with Dr. Peter Diamandis, XPRIZE’s founder and executive chairman. Under Peter’s leadership, XPRIZE has launched 27 previous competitions with over $300 million in prize purses. The latest contest aims to enhance healthspan, or the period of life when older people can play with their grandkids without any restriction, disability or disease. Such breakthroughs could help prevent chronic diseases that are closely linked to aging. These illnesses are costly to manage and threaten to overwhelm the healthcare system, as the number of Americans over age 65 is rising fast.

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Matt Fuchs
Matt Fuchs is the host of the Making Sense of Science podcast and served previously as the editor-in-chief of Leaps.org. He writes as a contributor to the Washington Post, and his articles have also appeared in the New York Times, WIRED, Nautilus Magazine, Fortune Magazine and TIME Magazine. Follow him @fuchswriter.