By Mark Antony Rossi
Aldous Huxley warned us of science and technology outpacing ethics and morality. The latest project in that category, The Human Genome Project, is a classic case in point. Billed as humankind’s most ambitious and beneficial scientific endeavor ever undertaken, The Human Genome Project’s incredible mission is no less than identifying every gene in the human body–all 100,000 of them. The public has been informed precise genetic identification may eventually lead to better treatments and possible cures to dreaded diseases like Down’s Syndrome, MS and AIDS. Indeed, medicine makes greater strides in effective treatment soon after a disease-causing gene is isolated. The abundant hope connected to gene mapping is not misplaced; its outcome holds enormous potential for alleviating the pain and suffering of millions.
What bears closer scrutiny is under-reported: the activities of large pharmaceutical and medical insurance companies creeping behind the scenes offering additional funding. The Human Genome Project, currently completely funded by the U.S. Government, is a giant, costly effort (in both time and money) expected to take at least five more years to complete.
Scientists, often a timid clique, are said to be buying into corporate-induced fears of public funding problems associated with complex projects. The Human Genome Project is about as complex and far-reaching as was putting Man on the Moon. Unraveling the entire structure of human DNA is biology’s equivalent of the first moon shot.
Americans do not possess the same economic appetite (due to the end of the Cold War) to spend vast amounts of capital on grand designs—even if it may benefit them. Every scientist working on a government-financed project normally has one eye on a test tube; the other on Congress person eager to cut a program to score quick public points.
Enter the profit-driven private sector. If their funding were to intervene little doubt remains commercial rather than medical considerations are bound to dilute or pollute groundbreaking discoveries. Taxpayer’s skeptical views of poor government performance, particular in the area of oversight, might cause government-funded scientific projects greater damage if they are forced into the hands of a private sector with virtually no accountability other than stockholders.
The future might witness financial aid packages earmarked for certain genetic areas companies believe highly lucrative. The total abdication of marketing and production rights for initially government-funded commercial research and procedures easily leads to developing exorbitantly-priced drugs the average patient could not afford without subsidies from the government. The same government funding development of the drug, pays again because it allows companies to escape from offering significant discounts as a gesture to thank the taxpayers.
You may add to the laundry list of wasteful spending, dubious decisions that pay the drug companies twice for the same drug through pharmaceutical aid programs. This reprehensible circumstance of which I have reported in the recent past, cost American taxpayers billions of dollars and is fast becoming a major campaign issue in the presidential and congressional races of the year 2000.
Combine that economic nightmare with medical insurance companies also paying these companies to develop embryo tests for the full spectrum of genetic diseases (soon to be identified by The Human Genome Project) and you will find insurance companies wielding a sure-fire method to discriminate against anyone identified with certain disease-causing genes (read: expensive) normally activated decades into their lives—or possibly never. The Human Genome Project, humankind’s most ambitious scientific breakthrough, might launch a new kind of sinister activity, 21st century’s newest bigotry: the genetic hate crime.
As members of a democratic society, we have a moral duty to question the motives of our elected leaders and our unelected moneymakers. It is quite evident The Human Genome Project has all the makings of both a blessing and a curse. If we truly seek to prevent the latter, we cannot afford to ignore the early warning signs. Six years ago, Francis C. Collins, the director of the National Center for Human Genome Research, was forced to retract five papers on leukemia after a junior colleague confessed to fabricating data used in them. This type of scientific fraud further indicts the cozy atmosphere of scientific peer review, lending more credence to independent scientific policing, the establishment of a strongly enforced code of genetic science ethics, and a powerful oversight board underlining the vital importance of obtaining consent from informed people participating in genetic research.
While most reasonable people agree charting unknown scientific territory is wrought with risky propositions an ethical crystal ball is unnecessary to divine most of the negative aspects brave new discoveries can impose on an unsuspecting population. The Human Genome Project as other expensive, complex scientific endeavors must not to be approached as a game of sport involving academic tenure, scientific ego, huge paychecks and lofty prizes.
If all of this is a technological game, then our lives are being played with in a most lethal manner. In the near future the joy of a newborn will be suffocated by parental fear of negative genetic tests dooming the child to a life without medical insurance. We as taxpayers are actually stockholders in the drugs and procedures that use our hard-earned monies to create these dilemmas. We hold the money and we shall surely become the victims if left uninformed. In a democracy an uninformed public is no more powerful than a citizenry enslaved by a dictatorship. Without an informed public demanding ethical standards and oversight Science is free of the constraints of moral consideration and fate of billions face exclusion, expulsion or extermination in the killing fields of the 21st century. An uninformed public is no more powerful than a citizenry enslaved by a dictatorship.
About the Author: Mark Antony Rossi is a poet, playwright and author of the bioethics volume “Dark Tech” now available from Amazon. His most recent plays have been produced in Liverpool and New York. http://markantonyrossi.jigsy.com