I’ve always been fascinated with the Human Genome Project (HGP), perhaps because that single effort by thousands of scientists from around the world offered such extraordinary promise to this generation, and to those that will follow.

With a map of the genes that form human chromosomes and with an outline of the sequence of all three billion units of DNA that constitute one set of those chromosomes, scientists could begin to actually quantify and describe what makes a human, human. (Not much, it turns out!)

They also could point to the miniscule differences that (might) make each of us unique. Those differences might help us succeed as athletes or mathematicians, or could predict how well or poorly our body will respond to the myriad environmental assaults it will endure through a normal life.

Every week, we read about research that picks up new connections between genetic combinations or anomalies, and disease. Thanks to the science that went into the HGP, we know there are markers for certain cancers, Huntington’s disease (remember Dr. 13 on House?) and some aspects of cardiovascular disease, among many other conditions.

According to a 1997 story in The Judges’ Journal of the American Bar Association, the Human Genome Project has given science a great set of tools to understand and, perhaps, fend off some human suffering caused by disease.

Using information gathered from genetic testing, physicians counsel patients on their risk for a number of medical conditions. Sometimes, they can help a person build a lifestyle or find other ways to reduce that inherited risk. Sometimes, they can’t.

After all, risk is -- by definition – a numbers game.  

Within our family, I can think of at least four people – three of them, young – who have considered genetic testing to determine whether or not they carry a marker for a particular cancer. In all cases, a parent’s cancer was considered familial long before there was science to prove it.

All four have declined testing. I don’t know why, but this op-ed in Sunday’s New York Times may provide a clue:

The New York Times
October 4, 2009

Dad’s Life or Yours? You Choose

So what would you do if your mom or dad, or perhaps your sister or brother, needed a kidney donation and you were the one best positioned to donate?

Most of us would worry a little and then step forward. But not so fast. Because of our dysfunctional health insurance system, a disgrace that nearly half of all members of Congress seem determined to cling to, stepping up to save a loved one can ruin your own chance of ever getting health insurance.

That wrenching trade-off is another reminder of the moral bankruptcy of our existing insurance system. It’s one more reason to pass robust reform this year.

To read the whole piece, click here



10/09/2009 05:41

Interesting post. I have a virtual friendship with Emma Darwin, fiction writer and great-great-grandaughter of Charles Darwin, I will alert her to your post. Emma told me she had her genome analysed and taken part in the Darwinian celebrations, she may have an insightful perspective on this.


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