Discussion Good, Dumbocracy Bad

The voices of patient advocates can be electrifying. Consider the following examples: "I am one of the many millions of Americans who will benefit from biomedical research, made possible by the dollars that you appropriate. I view this invitation to testify as my opportunity to change the world. If I choose the right words, paint the right picture, I hope to give you not only a glimpse of what it's like to have a neurodegenerative disease, but also a sense of the staggering utter despair, frustration, and anger that accompanies such a diagnosis. But the intensity of those emotions pale in comparison to my feelings as I see a potential cure for my affliction dangled in front of me, only to see well-intentioned people limit our brilliant scientists from reaching that goal."1 "1. We all agree on supporting medical research to find cures and treatments--but not in ways that require creating and destroying some human lives for possible benefit to others. 2. The clinical "promise" of cloning has been greatly exaggerated, creating false hopes in many patients. Embryonic stem cells have yet to prove their benefits even in animal trials, and many problems--including a tendency to form tumors in animals--remain unsolved. Cloning is even more speculative; even supporters say human treatments could take decades, if they ever arrive."2 These declarations, powerful and stark, are by, or on behalf of, patient advocates seeking a say in the debate over stem cell research in the United States. Who can deny that the victims of disease have a right to make their voices heard in the debate? They provide a tremendous emotional insight and help crystallize the issues in the minds of researchers, legislators, and the public. But there are problems. Both statements comment on the likely value of the science, but they come from people who are not fully qualified to advance such views. Unsurprisingly, they champion diametrically opposite positions. At best, the two comments cause confusion and cancel each other; at worst, they will entrench their supporters' sense of the righteousness of their cause. Accommodation becomes more difficult and, potentially, patient is pitted against patient. The rise of the patient advocate appears to be at the expense of expert testimony. Legislators and the public are giving more and more credence to "real people," inevitably causing a spiraling competition to produce the most moving testimony and the most resonant sound bite. This is a form of "dumbocracy," defined as the rule of cleverness without wisdom. The term is not intended as a slight against patient advocates, who provide a welcome and effective contribution to the debate (though they should steer clear of judging the science). It is aimed at the decision-makers and the media, who accept all views as being equal and play down the importance of experts. Our most eminent researchers should lead the debates on the scientific merits of stem cells. They are our best hope for getting the right outcome, and their opinions should be weighed accordingly. Richard Gallagher, Editorrgallagher@the-scientist.com References 1. J. Cordy, Testimony before the Senate Appropriations Committee on behalf of the Coalition for the Advancement of Medical Research, May 22, 2003; available online at www.camradvocacy.org/fastaction/news.asp?id=592 2. "Talking points for patient advocates: Letters to Senator Brownback in support of Brownback/Landrieu cloning ban (S. 1899)," National Committee for a Human Life Amendment, March 11, 2003; available online at nchla.org/patient.html function sendData() { document.frm.pathName.value = location.pathname; result = false if (document.frm.score[0].checked) result = true; if (document.frm.score[1].checked) result = true; if (document.frm.score[2].checked) result = true; if (document.frm.score[3].checked) result = true; if (document.frm.score[4].checked) result = true; if (!result) alert("Please select") return result; } .myradio{background-color : #94bee5} Please indicate on a 1 - 5 scale how strongly you would recommend this article to your colleagues? Not recommended 1 2 3 4 5 Highly recommended Please register your vote

Discussion Good, Dumbocracy Bad

Interested in reading more?

Become a Member of