Friday, April 21, 2006

There are two genetics-related stories on my internet news wrapup today. I can't not click on them anymore. (The sad, sad byproduct of taking a class in something--you see it everywhere and have to know about it.)

In the first, Genetics plays role in chronic fatigue syndrome, genes are demonstrated to have a possible health outcome:

The research is being called some of the first credible scientific evidence that genetics, when combined with stress, can bring on chronic fatigue syndrome — a condition so hard to diagnose and so poorly understood that some question whether it is even a real ailment.

But note the secondary function genetics is playing. A condition whose existence "some question" is demonstrated to have a genetic component. It, therefore, can be presumed to be real. This is testimony to the very strong explanatory power of genetics in our culture. If a patient reports symptoms, her report may or may not be accurate and/or helpful. If her genes report an anomaly, now that's something. DNA testing is supplanting even that forensic favorite "the eyewitness" as a sure-fire jury convincer. (Hmm. . . wonder if that will come up at all in a certain upcoming Durham legal battle.)

Of course, this is a subset of a more broad acceptance of the explanatory power of tangible medical data. One of my classmates read a book on "jury nullification"--cases in which the evidence for a defendant's guilt was uniformly understood to be conclusive, but the jury nonetheless acquitted. She said that in the majority of those cases, defense counsel gave some sort of physical, medical evidence that won the jury's sympathy. So, if a defendant claims to have been physically and sexually and emotionally abused all his life, the jury believes this history not to have any mitigating effect. But if the defendant claims some sort of structural injury, which can be shown on, say, a brain scan or a genetic test, juries are more likely to accept that explanation.

Is this a good or a bad thing? I'm not sure I know.

In the second story, Liver Transplant Saves Babies, mothers carrying a genetic defect which is uniformly fatal to their infant sons (but not their daughters) were spared the tragic consequences of their genetic defects. Early liver transplants saved the lives of two baby boys, easily the youngest ever recipients of liver transplants.

Keeley Gibbs knew it was risky to get pregnant. Doctors warned that she and her son born in January could have died. The young woman from Eldorado, Ill., like generations of her family's females, carries the gene for a rare metabolic disorder of the liver. OTC-deficiency is fatal in males, and in utero tests diagnosed the fetus with it. Gibbs wouldn't consider abortion. She survived the pregnancy and birth, and her son, Jacob, received a lifesaving liver transplant at St. Louis Children's Hospital at the youngest of ages, 10 days.

Now, perhaps the broader availability of cadaveric and live-donor livers accounts for the positive tone of this story. The subtext of this story, which you will easily pick up from the full article, is, "Isn't it great that medicine is overcoming genetics?" I'm guessing that a similar article might be written if kidneys were the subject.

I wonder what the tone of the story would be if the affected organ were the heart, or the lungs. The overwhelming attitude toward the more hard-to-come by organs is expressed by the all-knowing, all-powerful writers of bioethics scripture, Beauchamp and Childress: when a resource is scarce, guarding against "waste" is the most pressing moral obligation.

If Ms. Gibbs were the carrier of a genetic anomaly that uniformly destroyed the heart of her male sons, would doctors have been so sanguine about her "choice" to conceive and bear a child? Would she have received more pressure to abort, or at least use IVF combined with pre-implantation genetic screening? Or, if she was rabidly pro-life, to use one of the two available sperm-sorting techniques to bear only daughters? Would there have been some reaction to her failure to make a more "responsible" choice? Some blame-placing that justified keeping her child(ren) off any transplant list? Something along the lines of, "You know, this heart could have gone to a baby that was in a car accident, or had cancer. Some other child will die because this mother didn't use the reproductive technologies that are already out there to avoid this!" Would the afflicted child have been placed on a priority list at all?


CyberianTygre said...

This is why I am not an ethicist.

Rachel said...

And I suppose the sons of poor women, who don't have access to genetic screening and prenatal diagnosis, will just go on dying mysteriously, like this baby's great grand uncle did. Then the scarcity of money would preempt hand-wringing about the scarcity of organs ... why not "solve" the problem of priority by selling organs to the highest bidder? This, of course, is morally detestible, but not terribly out of step with the way our health care deliver system works in many other respects.

This is why I am not an economist.