When and what to whom?

By Ruth SoRelle, M.P.H.

In August 2001, then-President George W. Bush announced stringent rules for research into embryonic stem cells, limiting work funded by the United States to a small number of already established cell lines.

Under President Obama, we anticipate that those rules will change, opening up a new horizon for such work. However, that rules change will only presage a beginning – not an end or even an answer to the promise of stem cell research.

Careful promises

It is important for those who write about such work to impose limits on their prose and their implied promises.

Most people who write about health, science and medicine can tell you stories about what happens when they or their colleagues wax too eloquently about the promise of a new treatment or avenue of research before the results are in.

Certainly, I have seen the results of that with my own eyes. In 1995, I wrote extensively about the promise of gene therapy and even chronicled the results of the first such studies in humans. Gene therapy certainly proved no panacea in those limited first cases, yet I pushed the case so strongly that many people wrote and called me, demanding to be part of those first studies.

Interferon misunderstanding

Even earlier, I had to deal with the family of a dying child from England who sought treatment with what was then a new drug – interferon. The child did not receive the then-experimental drug, and his family returned home poorer and disappointed.

In July 2008, my own father died ultimately of kidney failure. However, reports on television and in the media stimulated his hope when they discussed "stem cell" treatments then underway overseas. The treatments, not proven and not monitored by any external agency, were offered to people without hope, and some patients traveled around the world to seek that care.

I had to tell my father that they were not real, and the results promised unproven. If I had had any inkling that they might have helped, I would have packed him and flown him anywhere for that care. However, I had been in the business of reporting science long enough to understand the difference between promise and proof.

Careful science

When studies with embryonic stem cells in the treatment of human disease come about in the United States, they will be undertaken with care. There will be scientific controls and there will be careful evaluation of any results. I would hope that we will understand the controls of such stem cells and how the signals that tell them to differentiate into tissues work.

And ultimately, I hope my colleagues whose words can provide hope as well as misinformation will carefully parse the science of such reports. Hope is important, but false hope breaks your heart.