Modern America is obsessed with data. Big data, everyday data, any and all kinds of data.
Some of this obsession can be seen locally in the growing quantum of data under the general rubric of Genetics. Consider: We each have about 19,000 protein-coding genes…our area universities feature centers for genetic medicine that engage more than 300 faculty members in more than 30 different departments…our medical directory already lists scores of genetic specialists…the annual birthrate here averages 44,000 infants with all those billions of genes instantly joining our metropolitan human gene pool.
Mix and match these data and what do we find? One answer would be the many cancer patients & survivors who until recently had no way of knowing that we were born with a genetic time bomb.
At first glance — by the healthy — the topic may be of passing interest. But to those whose genetic codes actually translated into diseases, it takes on more immediacy. Could we have been forewarned and thus forearmed? If so, how so? Questions no one asked when medical science did not yet know they existed.
Here in the Chicago area geneticists and ethicists are engaging such questions with increasing intensity. Assuming they can identify and isolate a disease-bearing gene, should the patient be told? Not told? Only the family told? After billions of evolutionary years, humanity has at long indomitable last been gifted with such questions; but like all gifts, neither bearer nor recipient can be quite sure of their consequences.
To stay with this image of a gift, we are reminded of ancient tales about the mixed blessings of other gifts. The Apple in the Bible…Pandora’s Box in Greek mythology…Aladdin’s Lamp in Arabic mythology…Seth’s Chest for the Egyptian God Osiris.
In each tale there is the Before & the After.
Before ~ as in the case of an expectant woman, genetic testing can now help identify chances for cystic fibrosis, muscular dystrophy, hemophilia, sickle cell anemia, and kidney disease. What it cannot identify are the consequences of her choice about her pregnancy. For instance, do I take it upon myself to give birth to a new human being whose destiny might be something magnificent from out of a deformed body?
After ~ as in the case cancer patients, genetic testing can help identify survival rates. What it cannot identify are the consequences of our choice about what do we do with our lives now. For instance with brain, breast or prostate cancer growing, do I tell the one to whom I am betrothed I cannot fulfill my promise to marry you?
Power is a seductive gift most everyone seeks in their lives. Power in the form of strength, of status, or of knowledge. In our century we have succeeded in harnessing vast stores of such power, long foreshadowed by stories from the wise. Theirs, however, was the luxury of envisioning without the burden of choosing.
Many of us now have that remarkable burden. We are only now discovering how to use it.
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