"Cancer-free" baby born in UK: what's wrong with this picture?

So: today's news reports that the first "cancer-free" baby has been born.

"What's this?" you ask. "Isn't it awfully rare for babies to have cancer?" Yep. Especially breast cancer, which is more common in older women. But the genetic test to identify known breast-cancer-causing mutations has been around for some time. Now, for the first time, it has been used as a prenatal test--technically, in this case, through preimplantation genetic diagnosis (PGD), which is testing embryos conceived through IVF prior to their being implanted in the uterus.

Certain rare BRCA mutations greatly increase a woman's risk of breast cancer and ovarian cancer--so much so that some women with these mutations decide on prophylactic surgery to remove their breasts and ovaries. However, because these really bad mutations are rare, experts recommend that only women with a strong family history of breast cancer pursue testing. The news story doesn't say whether the couple had such concerns, though presumably this is the case.

Stories like this one don't help the general public understand what genetic testing can and can't do. Even BRCA results are probabilistic: not everyone who has a positive result will go on to develop breast cancer. And there are prophylactic and curative treatments available for breast cancer (though they are, obviously, pretty awful). And who knows what the state of medicine and oncology will be by the time the BRCA mutation carrier born today is old enough to worry about breast cancer?

The opposite set of concerns plays in here too; the fact that this fetus happens not to have any of the mutations that have been shown to increase breast cancer risk does not guarantee that she won't get breast cancer anyway -- presumably there are causal factors we don't know anything about yet, since the vast majority of breast cancer is not due to one of these familial syndromes -- or any of the other zillions of cancers that afflict humankind. "Cancer-free" may be a misnomer in this case.

And finally, isn't there a morally relevant difference between choosing to terminate a pregnancy because of a positive diagnostic result (eg, Tay-Sachs, Down syndrome) and choosing to do so based on a measure of susceptibility? And no hate mail please: I don't mean to imply that the former sort of case is necessarily the right thing to do...only that some such choices might be more easily justified than others.

Who benefits from prenatal testing for adult-onset disease?

I recently stumbled across this article (free, but registration required) by SUNY Albany's Bonnie Steinbock. The paper examines the growing practice of prenatal testing and considers who benefits from such testing for adult-onset conditions (such as breast cancer, schizophrenia, and Huntington's disease).

Steinbock outlines the purposes of prenatal testing in general: (1) prospective parents who are willing to consider abortion may wish to make an informed decision about continuing a pregnancy; (2) prospective parents, including those who would not terminate, may wish to have information available to help them prepare for the birth of a baby with health problems or special needs; (3) society may reduce the prevalence of genetic diseases; or (4) prospective parents may seek testing "for the good of the child."

As Steinbock points out, the predictive value of tests differs (meaning that some tests provide definitive information about whether a person will develop a given condition, as in the case of Huntington's, while others offer much less certainty). Some conditions are preventable or treatable, and others are not (this is the clinical utility piece I've blogged about recently). And even for conditions that are not treatable today, prospective parents might still hold out hope for a future treatment.

Botom line: Steinbock doesn't buy the argument that prenatal genetic testing for untreatable adult-onset diseases can be justified on the grounds that it is for the good of the child. She rejects the wrongful life concept in this context, noting that "in almost cases the child, once born, will have a life worth living. This is so even in the case of severe disability at birth, and much more so in the case of adult-onset disorders." This isn't to say that Steinbock opposes selective abortion--she defends it elsewhere--but justifications other than the benefit of the child must be marshaled to support it.

Mandatory HIV testing for pregnant women in New Jersey

AP reports that New Jersey has passed a law that establishes a mandatory, opt-out program for testing pregnant women (and newborns at risk) for HIV.

New Jersey has about 17,600 AIDS cases, according to the Kaiser Foundation. Women represent 32.4 percent of the cases — the third highest rate in the nation. The national average is 23.4 percent.

The state has about 115,000 births per year and had seven infants born with HIV in 2005, according to state health department officials.

Bloomberg also reports:

Health-care providers will test pregnant women for HIV, the virus that causes AIDS, in their first and third trimesters unless they refuse, according to the new law. Newborns whose mother's HIV status is positive or unknown at the time of delivery also will be tested.

The rate of mother-baby HIV transmission has been dramatically reduced due to increased testing and preemptive actions:

The number of children in the U.S. reported with AIDS attributed to HIV transmission during childbirth declined to 48 in 2004 from a peak of 945 in 1992, primarily because of the identification of infected pregnant women and the effectiveness of preventative drugs in reducing mother-to-child transmission, according to the CDC report.

Some questions for consideration:

* Does a woman's right to informational privacy outweigh the state's interest in preventing HIV transmission to newborns?

* Does the incurable nature of HIV lend more weight to the latter?

* Does a woman cede certain personal rights when she decides to carry a pregnancy to term?

* On a finer point - which is more desirable in this circumstance: "opt-in" or "opt-out"?