You can make fun of me, but I do, on occasion, watch Private Practice, where attractive doctors magically fix people and cheesy romance abounds. Compared to its sister show Grey's Anatomy, it appears to be one of the only prime time television shows that consistently deals with serious medical ethics. In one recent show, for example, a Catholic doctor's 15-year-old daughter gets pregnant. (Spoiler alert: the doctor wants her to have an abortion, but the girl chooses to keep it). Writers use such ethical scenarios for television drama, but people are faced with these kinds of decisions more often than we might think.
Turning from planet Hollywood to planet earth, the Associated Press reports on how some inherited diseases appear to be declining or disappearing. Good news, right? The catch is that its because more couples are undergoing prenatal genetic testing. Not until the third paragraph do we learn the number of babies born with cystic fibrosis has been cut in half because of abortion.
More couples with no family history of inherited diseases are getting tested before starting families to see if they carry mutations that put a baby at risk. And a growing number are screening embryos and using only those without problem genes.
The cost of testing is falling, and the number of companies offering it is rising. A 2008 federal law banning gene-based discrimination by insurers and employers has eased fears.
Reporter Marilynn Marchione offers a few examples of how couples are deciding not to have more children or screening embryos. What do religious leaders have to say about these recent developments?
Although genetic testing can raise moral dilemmas, at least one conservative religious group--Orthodox Jews--has found ethically acceptable ways to use it to lessen diseases that have plagued its populations.
"I am a Holocaust survivor. I was born in the middle of the second World War. I hope that I am not a suspect for practicing eugenics. We are trying to have healthy children," said Rabbi Josef Ekstein of New York, who founded a group that tests couples and discourages matches when both carry problem genes.
I applaud her for at least finding a religious voice, but I find it odd that she would use one rabbi's opinion and apply it to all of Orthodox Jews. I'd also be eager to see more voices here, especially from religious leaders who might be able to explain some theological thinking in these areas.
The reporter explains the impact of genetic testing in one study:
In California, Kaiser Permanente, a large health maintenance organization, offered prenatal screening. From 2006 through 2008, 87 couples with cystic fibrosis mutations agreed to have fetuses tested, and 23 were found to have the disease. Sixteen of the 17 fetuses projected to have the severest type of disease were aborted, as were four of the six fetuses projected to have less severe disease.
What's unclear to me from the story, though, is how common it is for couples to get screened for diseases before a pregnancy. For example, this couple chose to have their baby despite risks because she saw an ultrasound.
Beth Meese, the Cleveland nurse who discovered from prenatal tests that she and her husband are carriers, wishes they had been screened before pregnancy. By the time they learned of their risk, they had seen an ultrasound and decided to have the baby no matter what its tests showed.
"We saw the baby, saw it moving," she said. "It makes that decision that much more difficult to make."
I'm also curious when in the pregnancy do doctors recommend taking genetic tests? Before the woman sees an ultrasound?
The reporter finds one voice who expresses caution:
Eliminating disease is a noble goal but also "should give us pause," Lerner, the Columbia historian, wrote recently in the New England Journal of Medicine.
"If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?" he asked.
I'm surprised she could only find a historian's written work to quote. Are practicing doctors raising these kinds of questions? The reporter ends her story on a note that leaves us feeling pretty warm and gushy about the idea of genetic testing.
It's a touchy issue. The Cystic Fibrosis Foundation points out that the disease varies greatly in severity, and life expectancy with it is now 37 years.
Diseases like familial dysautonomia and Tay-Sachs, which kill before school age, are easier cases. If one of those vanishes, "thank God," said Rabbi Ekstein of the Jewish testing group. "It gives me a very good feeling that we are a part of such life-saving efforts."
Overall, the majority of the story quotes physicians and cites studies. I know it's difficult to fathom, but people do look to more than their doctor for expertise when considering life and death issues. Something tells me other religious leaders would be itching to weigh in.