Genome Report Biased to Sponsors' Needs

The New York times had an update on the Human Genome Project this week, 10 years since the mapping of the human DNA was completed. The entire article is about whether new drugs have come onto the scene because of the mapping. The result, according to them, is that there are in fact no new drugs. Be that as it may, there have been great advancements that are ignored by the article.

In the early 1980s, my then wife and I planned to have children. She indeed got pregnant after a few years of marriage. She exercised, was very careful of what she ate, went in for regular maternity doctor visits and pretty much reflected the text book recommendations for pregnancy.

We went to natural child birth classes and set up a system for alerting me, a TV news cameraman at the time, for the big moment. Reporter Joe Lesem and I were on a story one sunny afternoon, when my pager went off. I radioed in and they told me to go to the hospital. Joe dropped me off.

The blessed event turned into one of the two worst nights of my life and I am now 53. As the doctor asked the nurse to change the radio station playing in the delivery room, the trauma was already beginning. He couldn't have known there would be a problem, but as that beautiful girl emerged from the womb, he knew something was very wrong. She was not breathing right. He desperately, repeatedly tried to intubate, “sans success,” according to the nurses notes. Jennifer survived the night but was too weak to breathe on her own. After weeks of testing, it was determined that she had an autosomal recessive trait called Werdnig-Hoffman Disease. The cells in the spine that transmit out to the muscles were compromised and deteriorating. It is an autosomal recessive trait. She lived six months in intensive care with president Reagan's right to life 800-number posted on the walls of the neonatal unit; “If not everything is being done to save a baby's life call this number...,” before her little heart finally gave out.

There is a one-in-fifty-thousand chance that a person is a carrier of it. We might have been the only two at the University of Florida where we met, and we didn't even like each other at first! Bad luck. You see in autosomal recessive disorders, both parents have to be either Ab, or aB. If the baby comes up with ab, then the disease is present.

I mentioned that this was one of two worst nights of my life. Well, we tried again and had a healthy son who is 25 now and one helluva guy. But we stupidly, and I am constantly guilty about my extreme greed, tried again and failed on our third baby. God forgive me. There was absolutely no way to know for sure whether the original diagnosis was correct, whether we were carriers, or whether the fetus would wind up “ab.”

So as you can see, I have had a personal interest in the Human Genome Project from the start. During my years of covering it, Reagan gutted funding for it, the Clinton administration figured out how to make it profitable for private business and the mapping of the genome was completed.

In the mapping, a marker for Werdnig-Hoffman was found, along with hundreds of other disorders. With a blood test, one can find out whether they are a carrier. My son and his future wife will be able to make informed decisions. It is an amazing accomplishment, not just for him but for the family lines that led to him. You see my grandmother had a “still born” baby in her first pregnancy. My ex-wife's mother did too. But from here on, there will be a way of knowing, whether or not a drug is discovered to “fix” the problem.

I wondered why the NY Times article ignored such advances, that obviously benefit the population of the world, and then I looked to the right of the article and perhaps found my answer. Big Pharma is the sponsor of the web site and a big advertiser in the print version of the paper, as with all others. Is that why the people are ignored and the impact on drug companies is the focus of the article?

The Fourth Estate Sale.