Guest guest Posted May 18, 2002 Report Share Posted May 18, 2002 A piece to the New York Times Sunday magazine re the recent cloning debate (or lack of it) in the US by Prof.Abraham Verghese. A few months ago I visited an AIDS organization called the Freedom Foundation on the outskirts of Bangalore in South India. The brainchild of a visionary Dr. Ashok Rau.The whitewashed buildings, once part of a chicken farm, had been converted into a haven for people with HIV infection. By scrambling, begging and cajoling, the volunteer staff managed to get anti-retroviral drugs for every child there with HIV infection. So much was being done with so little, and yet with smiles, with grace and courage. For the adult patients the future did not look bright. Though some looked well, others were wasting away from unchecked HIV infection. Had they been able to afford the medications, or for that matter, had they been citizens of the U.S. and patients at my county hospital in El Paso, Texas, I felt that in no time they would have had flesh on their bones, the strength to sit up and the prospect of a future. The patients at the Freedom Foundation and their caregivers could only look to the horizon and hope that someday, in some research lab, a scientific breakthrough would result in a novel means of attacking HIV, something both effective and affordable. If this were to happen — whether vaccine or drug -- the odds are great that it would come from an American research lab. The United States has not only been at the forefront of AIDS research, it has become the de facto biomedical research wing of our planet, the R & D arm of all nations. All over the world parents of children with AIDS, with diabetes, with cerebral palsy and so many other diseases dream of a breakthrough that might change their child’s future—it is to the U.S. that they look for such a miracle. Quaint as the image might be of a researcher in the field with a pith helmet, a microscope and a pipette making a Nobel Prize winning discovery, those days are largely over. Tackling the tough questions of basic science r! equire well trained scientists, supercomputers, cell-sorters, and the sophisticated and expensive tools of molecular biology, not to mention huge amounts of money. How surprising and embarrassing then that we might be slamming the door on cloning human embryonic cells (which is what the House of Representatives voted to do); even stem cell research using the cells from left-over embryos in fertility clinics may be in jeopardy. Potential scientific advances that might reverse the course of Parkinson’s disease or diabetes will remain unexplored, at least in America. The ruling by Congress, in its abruptness and its finality and the magnitude of its penalties for those who dare oppose it, contradicts our reputation as a nation committed to excellence in medicine and research. Indeed the ruling made me think of the Taliban and their draconian edicts: no sorting out of details, no distinctions, meaningful debate drowned out by fundamentalist rhetoric, and then an a priori proclamation of what the truth is, followed by the order — destroy the Buddhas. Let me make clear, I am a clinician, not a bench researcher. The moral and ethical concerns about cloning and stem cell research do not escape me. Far from it, I know how easy it is to slide down the slippery slope of abusing technology: amniocentesis and ultrasound technology in some parts of India are used largely to find and abort female babies. Still, on the continuum between benefits and risks, was there not a place where we could have allowed narrowly targeted scientific research by proven investigators to proceed? No human versions of Dolly the sheep, thank you very much, but why not a limited exploration of the potential of these cells to reverse life-threatening diseases? America, the beautiful, the brave—where is our courage? The world with good reason expects better of us. Move the Taliban a notch or two down on the moral ladder and they resemble us more than we would like to admit. This is the paradox that I find most curious: we are at once a sophisticated nation living through an explosion of scientific and technological advances, and yet at the same time we can display a surprising backwardness. My patients often know more about their disease from the Internet than I do. Vicariously, through TV and the print media we have peeked into bedrooms, operating rooms, boardrooms and courtrooms and traveled all over the planet. But even though we live in the era of the new, new thing, the cloning dialogue has never risen to that level of sophistication. This is what my friends abroad find most surprising about us: moxy on the one hand (we’ll build a missile shield without any proof that we can) and a puritanical tendency to retreat to a shaky moral high ground on the other. In my HIV clinic in Texas last week I saw a young woman—a physician-- who was failing her treatment regimen; the virus she harbored had learned how to resist the drugs I had her on for the last year. But I had in my hands the results of a genotype test, a test where her particular viral strain had been probed to see if it had the gene patterns that predicted resistance to other drugs, drugs that we had not as yet used on her. " Wow, " an intern working with me said as he looked at the genes of her virus listed on a printout that looked like a felon’s rap sheet, " I didn’t know we could do this. " Yes, son, fortunately we can. The ethical debate when it came to gene splicing and recombinant DNA and cloning genes did not shut down those techniques. Whether stem cell and embryonal research can actually live up to scientists’ expectations remains to be seen. But the possibility of bringing relief to those who are suffering is simply too precious to pass by. To turn our backs on such research robs patients with incurable disease of the one thing they cling to--hope. Osler, the great man of American medicine (who died prematurely in 1919 of a lung infection for which we now have a slew of antibiotics) said in a statement that has been taught to generations of medical students, " it is not for you to don the black cap and assuming the judicial function, take hope away from any patient . . . hope that comes to us all. " Abraham Verghese is the Grover E. Murray Distinguished Professor of Medicine at Texas Tech University. His most recent book is " The Tennis Partner ___________________________________ Quote Link to comment Share on other sites More sharing options...
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