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Saleem H. Ali

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Humanizing Stem Cell Politics

Posted: 02/ 7/2012 2:13 pm

As the election season heats up, the issue of stem cell research and the rights of embryos is once again taking traction. The Komen funding saga this past week suggests that we have yet another battle awaiting scientists and health professionals. Many political candidates are being held hostage by absolutist ideologies about the "right of embryonic cells" despite exhortations by an overwhelming majority of scientists regarding the salience of such research for science. This polarization really hits home for me as the parent of a child who could easily benefit from such research, and who has examined the history of scientific advancement, acutely aware of the peril of "false hope."

Eight years ago this February our older son Shahmir (now aged 13) was diagnosed with Type-1 diabetes. His symptoms of excessive thirst during the winter months had mentally prepared me for the worst news to come from the doctor. My wife and I were caught in a torrent of emotional turmoil as we were told how Shahmir's life was to be dependent on a delicate balance of one indispensable molecule -- insulin. The most daunting challenge for us in keeping Shahmir healthy was to ensure that he got enough insulin but not too much. If he got even a few more units of insulin than his body needed, he could sink into hypoglycemic shock and risk sudden death.

Our sentiments swayed from denial, to anger to guilt to grief and finally acceptance of our predicament. The doctors assured us that there was nothing we could have done to prevent this illness since the complex confluence of genetic and environmental factors that cause Type-1 diabetes are very different from those that lead to the far more common and diet-related Type-2 diabetes. Shahmir was not obese or consuming excessive sweets, or displaying any unhealthy behavior patterns, yet he would now have to lead a life of tremendous discipline and self-denial in order to survive. After the initial months of grief had abated, we reconfigured our lives and returned to a tenuous sense of normalcy.

As an academic, my coping strategy for this situation was to find out as much as I could about diabetes and most importantly about insulin, which has relevance to current debates between stem-cell proponents and opponents. The Nobel Prize-winning discovery of this molecule in 1922 by Canadian researchers Frederick Banting, Charles Best and John Macleod is ranked among the most important medical achievements of all times. Millions of lives have been saved by the persistence of these men and their colleagues in numerous countries who struggled against all odds to extract the molecule and not be dissuaded by convention, ideology or political territoriality.

They were willing to persevere, even though many researchers before them had given up. Their allegiance to scientific methods as well as their willingness to collaborate with industry made it possible to mass produce insulin within a year of its discovery. The pharmaceutical company, Eli Lilly started producing bovine insulin through collaboration with the research team and a global effort was undertaken to distribute the life-saving medication. Long before the era of email networks or international organizations such as the United Nations, professionals from various fields united to work on an effective standardization of insulin and make it available globally at an affordable cost. In the words of medical historian Christiane Sinding, the standardization and distribution of insulin was "a result of the impressive working of a trans-disciplinary and trans-national network."

It is through such efforts of uniting in our common humanity that diabetics worldwide can now live relatively functional lives and contribute to human achievement, exemplified by U.S. Supreme Court Justice Sonia Sotomayor or Oscar-winning Hollywood star Halle Berry. Five years ago, William Cross, became the first Type-1 diabetic to summit Mount Everest -- perhaps the ultimate test of human physical accomplishment. Such inspirational stories give us hope that Shahmir will also have a fulfilled life. His regimen of insulin injections has been transitioned to a digital device that infuses the precious molecule into his body when needed. We still have to check his blood sugar several times a day but he now considers these to be more metaphoric "pin pricks" of life.

Global efforts to fight diseases and reduce human suffering should not be put on the altar of "slippery slope" politics or absolutist ethics. Science and human resilience have triumphed so far against diseases like Type 1 diabetes -- as the story of how insulin was discovered and distributed shows us. The next step towards finding a cure for this disease will require us to make the same kind of bold decisions that consider the greater good of science and human development. Appropriate bioethical procedures for approval must always be followed for research but the criteria for evaluation should be driven by objective metrics rather than theologically entrenched emotionalism.

Let's hope that all political candidates will agree to defer on such matters to scientists and existing bioethics frameworks within the U.S. health care system rather than playing political games with the lives of those who need our protection the most.

 

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