It’s been many, many years since I’ve sipped a cocktail like the one above, but this was the celebratory drink ordered for us by I don’t know whom on the last night of the NIH hESC training course. The tray of drinks reminded me of a plate of cell cultures so I snapped a photo. It was a fun evening and by the time it arrived, the scientists were generally at ease with this “religious woman.” I really liked them, as was the case last time I attended.
Two interesting conversations stuck with me from the final evening. First, a Brazilian woman asked me if I’m able to separate my personal beliefs about hESC research from my reporting. It’s a fair question, but one nobody asked of Gary Robbins … and he wasn’t shy about sharing his beliefs, religious or otherwise.
Every day of the week, journalists must set aside their personal convictions and report the news. Non-journalists sometimes think this doesn’t happen; they see bias everywhere. In fact, my first introduction to the notion of postmodernism came not from any discussion of pop-philosophy, but from the Walter Lippman classic Public Opinion. In it, one of the founding editors of The New Republic argued that we all see life through the limiting lens of culture and language. The best we can strive for is fairness. Read Lippman’s Wikipedia bio; it provides a compelling look at the interplay of democracy, philosophy and the news.
Gary reports differently about hESC research than I would, but not only because we have different beliefs about the ethics of this work. He is under daily news deadline pressure and I’m an occasional, long form writer with a bent for investigation. I look for what’s not being said or reported. In this case, what’s not being reported with any regularity or conviction in major news outlets is that hESCs are not likely to be the great therapeutic hope they have been pumped up to be.
This is not my opinion, but the somewhat reluctant opinion elicited from 10 prominent scientists who were asked some challenging questions at yesterday’s concluding symposium. The first question was: What are the long-term cancer risks of hESC therapies? Jeanne Loring, whose extensive credentials include work on the Human Genome Project and collaboration on the WARF patent challenge, did not let any of her peers off the hook as moderator of the Q&A. One by one the Oxford guy, the Stem Cell Inc. guy, the Stanford guy et. al. admitted that they have no idea and no answer for this concern.
That’s big news in and of itself, but not for this venue. …
The other significant conversation I had on our final evening together was with the scientist who asked me about The Secret. She did foundational work in the hESC field … as a born-again Christian. The work kept her out of church for ten years, until one day she was looking at hESCs differentiating into various cell types under her microscope. They reminded her of the human race in all its diverse beauty. She imagined God looking down upon humanity through his lens and desiring us to sing hymns and praise songs to him in unison (hESCs have a biological imperative to congregate). She decided it was time to go back to church.
This gracious Christian who was admired by everyone shared her story freely. However … however. She is still not entirely comfortable with her hESC work … and she won’t be telling her story on the record any time soon.
There is much, much more that can be said about the past ten days, but I came away from them with three strong convictions:
- Nearly as important as the ethics of hESC research is the lack of regulation in the IVF industry. The United States is far behind many European nations in its concern for 1) the well-being of women receiving IVF therapies, 2) children born of egg/sperm donation and multiple births, and 3) both the exploitation of egg donors and the fate of their eggs.
- The best hope for therapeutic uses of stem cells lies in iPSCs that originate in one’s own body. Not only do potential hESC therapies pose significant risks, but adult stem cell therapies from donor sources do as well. Arlene Chiu asked the representative from Stem Cell Inc. if the stem cells in their inaugural FDA-approved human trial had been tested for diseases like neurofibromatosis (NF). Chiu had heard a talk by an NF1 researcher who found that neural stem cells transplanted into a mouse brain resulted in a proliferation of NF tumors in the brain. The Stem Cell Inc. representative said that some screening had taken place, but it was not comprehensive. Chiu was incredulous.
- The hype over hESCs has done considerable harm. During the panel discussion, the eminent panelists were confronted by an Autism advocate who wanted to know what can be done about desperate parents taking their sick children outside the United States for non-FDA approved stem cell treatments. One MD commiserated with the woman’s experience, saying it mirrored his own; another panelist noted that a scientist who had investigated charges against a Chinese clinic had been subjected to an “investigative review” of his own by the scientist whose advertised results he found spurious. No suggestions were offered … nor was any responsibility taken for pumping hESC research up and selling it as THE great hope for all manner of human suffering.
UPDATE 3/19: Clarification on this post.