Haves & Have-Nots/Valids & Invalids
‘Ethical, Legal, and Social Implications of Genomic Medicine’ has provoked some serious thought on my part. To quote Dr. Ellen Wright Clayton, “The broadest question is whether the public’s health is actually improved by the knowledge derived. A major determinant is access to testing and to the medical interventions that may be warranted as a result. In our current multipayer system of health care, people will have widely differing levels of access to these forms of technology. One cannot assume that everyone will reap the benefits of this knowledge.” Where do we draw the line between the irresponsible public institutions performing genetic testing and the elite private institutions? How do we choose which is appropriate when? If the technology is possible and available to test newborns, should the state be responsible for it? Should the private sector?
When the capability exists to potentially improve an individual’s life, often the initial response is to say that to withhold that promise of improved livelihood is immoral. Do we drive for the famous footstick scene in Gattaca if that is the best means of protecting a child? Do we engineer that child to not have diseases in the first place? This would provide the best protection–to remove the flaws inherent in human frailty. But weaknesses of other sorts would soon become huge problems in the absence of physical malady, and suddenly the best protection would be intellectual tinkering or physical amplifications in order not to fall behind one’s peers. And certainly the government would not provide these services, effectively pushing us towards the valids and the invalids along class lines. Who will protect the poor if the government does not?
Where does the slippery slope begin? How do we avoid it? I certainly don’t have the answers, but Dr. Clayton has reminded us of the necessity of vigilance and careful consideration.