Saturday, May 1, 2010

Human Quantification and its Discontents

The New York Times posted a profile yesterday of a woman who was fired by her employers, allegedly because of her genetic history. She learned that she had a genetic marker for breast cancer. Given her family history, she decided to have a preventive double mastectomy. She informed her employer of her intentions, believing she enjoyed a good relationship with her supervisor. Following her surgery, she found her duties lessened and eventually she was terminated from her position as director of public relations for an energy company. Her performance on the job had previously been considered exemplary.

These are allegations; the case has not yet proceeded to trial. The woman in question formally filed her complaint this week with the Equal Employment Opportunity Commission. As the Times points out, however, it does raise serious questions about how we as a society will use genetic information. Will cases such as this lead people to forgo genetic testing in fear their employers will find out? Will genetic information eventually become an accepted part of the stable of data we use to quantify ourselves and our worth in society?

The scientific progress geneticists have made ensures that this is a different debate from those of the past. We have more and better information; more and better science. Even so, the controversial public policy questions that arise from the advance of genetic technology should be tempered with a strong understanding of the history behind evaluations of humanity in the United States (and, indeed, in the West as a whole).

American history is littered with false assumptions about human biological capacity based upon inaccurate information, blatant racial prejudice and errant application of principles from one branch of science to another. We have categorized "races" baced upon the shape of human skulls and placed them into a hierarchy of human capacity. We have argued that people from different parts of the world, and even different parts of Europe, have different innate characteristics that inexorably lead to different destinies. This is the "logic" that underlay the immigration debate of the early 1900s and highly restrictive legislation passed in 1921 and 1924 that established quotas on immigration from various countries. Immigration from southern and eastern Europe, for example, was choked off almost entirely because it was argued that individuals from these parts of the world were inherently less ambitious and less talented, more inclined toward dissipation and destined to remain in urban slums for generations. In some circles, we enthusiastically applied Darwin's evolutionary principle to human society, arguing for "survival of the fittest" as a tidy excuse to dismiss those with fewer opportunities and resources as inherently less fit to succeed.

Not pretty.

So... we had better be extremely careful how we use this new trove of genetic information. It is very important data; while arguments can be made about the propriety of too much preventive surgery, the woman above may well have saved her life through her procedure. (Part of the irony of the case is that she was actually less likely to experience medical problems following the surgery, yet she was still--again, allegedly--fired.) The genetic advances we have made will, I pray, lead us toward new treatments that will eradicate disease and help us lead healthier lives. A lot of human grief and trauma may be prevented by the knowledge this genetic data brings, and that will be a wonderful thing.

When it comes to human capacity, however, it is important to remember two things. First, science brings new understanding with every generation, and the assumptions we make now may be regarded as grossly inept and even prejudiced a few decades down the line. Caution should govern our every move, mindful of the mistakes we have made in the past.

Second: some of the most highly regarded individuals in our history have suffered from serious medical problems. Franklin Roosevelt was a polio survivor, paralyzed from the waist down -- and regardless of one's personal opinion of his policies, it can hardly be denied that he occupied an incredibly strenuous and stressful position for twelve years. John F. Kennedy was in serious medical pain through most of his presidency, yet he kept us from nuclear war during the Cuban Missile Crisis. Stephen Hawking, one of the most publicly prominent scientists of our time, suffers from ALS so severe he speaks through a computer synthesizer.

In short, genetic perfection is NOT a prerequisite for greatness. We would do well to remember the complexity of human life and the human spirit.

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