Why Reporting on Stem Cells Matters

Here's why getting accurate reporting on cells, not just a matters. Gareth Cook of the Boston Globe reports on international clinics offering "stem cell treatment"--treatments that in reality do not exist.

The people using these clinics are mostly parents of children with terminal diseases, parents who are so desperate that they'd "sell their souls" in exchange for a cure.

Here's some of the clearest reporting out there on the gap between stem cell potential and medical reality:

For anyone listening to the escalating fight over embryonic stem-cell policy, which has become an issue in the presidential campaign as well as the national divide over abortion, it is easy to conclude that the research is on the verge of delivering cures. Opponents of the Bush restriction -- including former first lady Nancy Reagan -- have pleaded for a change on behalf of loved ones. Even the president, in announcing the restrictions, spoke of the cells' power to help with Alzheimer's disease, Parkinson's disease, juvenile diabetes, and spinal cord injuries.

Yet the gap between the potential -- the young field could revolutionize medicine -- and the reality for patients is vast. Researchers can isolate the cells, but they do not know how to coax them to become many of the cells in the body. It is possible that the study of embryonic stem cells will yield knowledge that will lead to new drugs, but that is a long road, too. Today there is simply no embryonic stem-cell medicine.

But for patients and their families, these caveats can sound like an excess of caution.

"Because of all the hype, it makes stem cells seem like a secret that is not available to you," said Pat Furlong, executive director of Parent Project Muscular Dystrophy, an advocacy group.

Cook reports on the heartwrenching story of James Rosetti, a 15 year old with Muscular Dystrophy, whose parents paid more than $30,000 to a clinic in Kiev that offered "embryonic stem cell treatment" which turned out to be of a dubious nature. He captures the Rosetti's heartache and their determination to find a cure for their son in a respectful and humane way.

Here's the lead:

Many children have dreams about flying -- soaring on wings, maybe, or zooming around like Superman. James Rossetti, a blue-eyed 15-year-old, says he doesn't have any of those. He dreams about walking.

James, who has his father Ray's dark hair, was a bustling toddler. He kicked around, Flintstones-style, in a bright yellow-and-red Little Tikes car. He loved baseball, just like his dad, and even with a fat Wiffle ball bat, Ray said, the kid had a beautiful swing.

But when James was 5, Ray and his wife, Karen, began to notice problems: an awkwardness to his gait, trouble walking on the stairs, occasional complaints of "sore legs." They took James to the doctor for tests. The next day, Karen called Ray at work. She was sobbing so hard she could barely speak.

Cook has captured the emotion that drives stem cell proponents--the desire to find a cure for people, like James, who suffered from debilitating and cruel diseases. He did the same in this earlier piece about a couple who donated their spare embryos to science.

He also points the enourmous gap between the potential of embryonic stem cell treaments and harsh medical reality. There are no miracle cures, and aren't likely to be for some time.

What we need is more reporting like this--honest about difficulties involved, and hardnosed about the scientific evidence.

If you listen to the rhetoric of embryonic stem cell proponents, you get the impression that the only thing standings in the way of these miracles cures are the medieval principles of a few religious fanatics. Too many doctors and researchers have been willing to exaggerate and make false claims about stem cells in order to get government funding for their projects. Too many reporters have been caught up in the ideological battles about stem cells to report on reality.

This can't be allowed to go on. As Cook points out, the stakes are just too high.


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