On Gene "Therapy," and the Therapeutic Misconception

Here at MH Blog, I've posted several times on the woeful state of both public and academic discourse about genetics, and the high prevalence of reductionistic views of genetic causation.  Some particularly visible critics, like Richard Lewontin, whose work on the matter should be required reading for anyone venturing to write anything at all about the ELSI of genetic science, have charged that such reductionism proliferates even among scientists.

In this context, I wanted to note the news that

For the first time, researchers have shown that gene therapy can be used to improve vision for blind children and young adults. Two new studies document the treatment of six young people who underwent the potentially groundbreaking surgery at the Children's Hospital of Philadelphia and the University of Pennsylvania and at Moorsfields Eye Hospital in London.

The BBC news article on the story notes:

His doctors were shocked at the improvement.

Professor Robin Ali, of the Institute for Ophthalmology, who led the trial, said: "To get this indication after only three patients is hugely exciting.

"I find it difficult to remember being as excited as I am today about our science and what it might achieve."

A few comments:

First, it is wonderful that the use of these techniques improved, or at least halted the degeneration, of several people's eyesight.  The amelioration of human suffering should always be recognized, validated, and lauded.  That these successes hold promise for future efforts at healing and easing human suffering and illness is obviously significant, as well.

Second, however, note the lede to the ABC News article: "for the first time."  Yes, indeed.  One of the most obvious datum for the prevalence of the therapeutic misconception is the continued usage of the term "gene therapy" in place of the more accurate (PDF) "gene transfer research."  Gene transfer research has, thus far, been long on promise and short on therapeutic results.

In and of itself, of course, there is nothing wrong with this.  Most worthwhile scientific endeavors feature a very great deal of failure before any kind of success.  Yet to term gene transfer research "gene therapy" is to beg the question of its therapeutic nature.  The entire question, for anyone who wishes to practice any kind of evidence-based healing, is whether there is good evidence for believing a given intervention will be therapeutic. 

As such, I continue to have difficulty understanding why both lay and professionals alike continue to refer to this kind of research as "gene therapy."  This datum suggests just how deep and widespread is the therapeutic misconception, especially when we have some reason to believe that gene transfer research poses no insignificant amount of risk to the human participants.

The March/April 2008 issue of the Hastings Center Report features an article written by Paul Gelsinger (Jesse's father) and Adil Shamoo, querying whether there is good reason to believe that human participants research is any safer 8 years after Jesse Gelsinger died (PDF).  They generally answer this question in the negative (as would I), and it is worth noting that some of Paul Gelsinger's public comments after Jesse died suggest that both he and Jesse were laboring under the therapeutic misconception.  (To be more precise, Paul's comments indicate that he was misled into believing the intervention would be likely to produce individual benefit for Jesse).

My point is simply this: while it is wonderful that an application of gene transfer research has demonstrated therapeutic efficacy, there are other important lessons lurking in the background of the story that should not go unnoticed.

Finally, speaking of the University of Pennsylvania, Anita Allen has an apt article up on SSRN entitled

The Poetry of Genetics: The Pitfalls of Popularizing Science.

Hypatia: A Journal of Feminist Philosophy (forthcoming).

Abstract:

The role genetic inheritance plays in the way human beings look and behave is a question about the biology of human sexual reproduction, one that scientists connected with the Human Genome Project dashed to answer before the close of the 20th century. This is also a question about politics, and, it turns out poetry, because, as the example of Lucretius shows, poetry is an ancient tool for the popularization of science. "Popularization" is a good word for successful efforts to communicate elite science to non-scientists in non-technical languages and media. According to prominent sociobiologist E.O. Wilson, "sexual dominance is a human universal." He meant, of course that men dominate women. Like sociobiology, gene science is freighted with politics, including gender politics. Scientists have gender perspectives that may color what they "see" in nature. As the late Susan Okin Miller suggested in an unpublished paper tracing the detrimental impact of Aristotle's teleology on western thought, scientists accustomed to thinking that men naturally dominate women, might interpret genetic discoveries accordingly. Biologists have good, scientific reasons to fight the effects of bias. One must be critical of how scientists and popularizers of science, like Genome author Matt Ridley, frame truth and theory. Ridley's "battle of the sexes" metaphor and others have a doubtful place in serious explanations of science.

Recommended!

Comments

[Tim Fedak]

The distinction between research and therapy is an important one, and you raise the points well in your post. However, citing the popular media for misconstruing or oversimplifying research terminology only superficially supports the points you make.

The media write for a very low grade level - so I for one would be very surprised if they would ever feel the distinction is even possible to make in the very limited story size they have available. The simplification of the language in these examples is more to do with the limited vocabulary available to the large media sources.

Thank goodness we have blogs to sort out these important details.

TF

[Daniel S. Goldberg]

Tim,

To an extent, I agree with you, but I would hold at least some members of the media to higher standards. There is no reason why, conceptually, it ought to be so difficult to point out the difference between experiments and proven therapies. The fact that this is barely mentioned at all is part of the problem.

But I do agree that the larger responsibility for perpetrating the misconception lies elsewhere.