An Astounding Treatment at an Astounding Price: Who Gets to Benefit?

An Astounding Treatment at an Astounding Price: Who Gets to Benefit?

Tony and Kelly Mantoan, with their boys Teddy and Fulton, who both suffer from SMA, a genetic disorder that makes walking, swallowing, and breathing progressively difficult.

(Courtesy Kelly Mantoan)


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Sarah Watts

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

Have You Heard of the Best Sport for Brain Health?

In this week's Friday Five, research points to this brain healthiest of sports. Plus, the natural way to reprogram cells to a younger state, the network that could underlie many different mental illnesses, and a new test could diagnose autism in newborns. Plus, scientists 3D print an ear and attach it to woman

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The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.

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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.
Can blockchain help solve the Henrietta Lacks problem?

Marielle Gross, a professor at the University of Pittsburgh, shows patients a new app that tracks how their samples are used during biomedical research.

Marielle Gross

Science has come a long way since Henrietta Lacks, a Black woman from Baltimore, succumbed to cervical cancer at age 31 in 1951 -- only eight months after her diagnosis. Since then, research involving her cancer cells has advanced scientific understanding of the human papilloma virus, polio vaccines, medications for HIV/AIDS and in vitro fertilization.

Today, the World Health Organization reports that those cells are essential in mounting a COVID-19 response. But they were commercialized without the awareness or permission of Lacks or her family, who have filed a lawsuit against a biotech company for profiting from these “HeLa” cells.

While obtaining an individual's informed consent has become standard procedure before the use of tissues in medical research, many patients still don’t know what happens to their samples. Now, a new phone-based app is aiming to change that.

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Susan Kreimer
Susan Kreimer is a New York-based freelance journalist who has followed the landscape of health care since the late 1990s, initially as a staff reporter for major daily newspapers. She writes about breakthrough studies, personal health, and the business of clinical practice. Raised in the Chicago area, she holds a B.A. in Journalism/Mass Communication and French, with minors in German and Russian, from the University of Iowa and an M.S. from the Columbia University Graduate School of Journalism.