Dana Goldstein

Facts About "Snowflake Babies"

To protest President Obama's lifting of the ban on stem cell research, Republican Congressman Chris Smith of New Jersey is hosting a press event this afternoon featuring so-called "snowflake babies." These children are the result of one couple donating a frozen embryo, conceived through in vitro fertilization, to another. When George W. Bush banned embryonic stem cell research in 2001, he appeared publicly with snowflake kids and their parents.

But is the possibility of embryo "adoption" really an argument against stem cell research? Not at all. There are approximately 400,000 frozen embryos in the United States, but less than 2,000 children have been born through embryo donation. As Liza Mundy reported in a 2006 Mother Jones feature and subsequent book, couples often agonize for years over what to do with embryos left-over from IVF treatments. But a study by Northwestern University psychologist Susan Klock found that almost every couple who believed they would donate an embryo to another, infertile couple ended up backing out. Why? It was just too strange for those parents to think of another family raising children that would have been, biologically, the full siblings of their own kids. Far more parents were comfortable with donating the embryos to scientific research, or simply allowing them to languish in a laboratory.

In short, given the tiny interest in embryo donation and adoption, there is no reason why embryonic stem cell research cannot coexist with "snowflake" programs. Some experts, though, go even further, calling embryonic adoption unsafe. Arthur Kaplan, director of the Center for Bioethics at the University of Pennsylvania, has said such programs are a "sham" perpetrated by anti-abortion activists intent on portraying all fertilized eggs as full-fledged human beings. Kaplan writes, "If you are infertile and are trying to have a baby, your best bet is not to use a frozen embryo made by a couple who had themselves been going through infertility treatment and whose embryos were not used because they did not look healthy enough."

cross-posted at TAPPED

Are Autism and Schitzophrenia the Same Disease?

Now that the election is over, all of our brains are free to consider a broad range of topics beyond electoral politics. Thank goodness, right? I was fascinated by a piece from yesterday's Science Times about an experimental and mostly, so far, untested theory of genetics. It posits that autism, schizophrenia, and most other psychiatric conditions are actually all the same disorder, just filtered through genes of different genders. I know this is strange and complicated, so I'll let Times writer Benedict Carey explain:

Their idea is, in broad outline, straightforward. Dr. Crespi and Dr. Badcock propose that an evolutionary tug of war between genes from the father’s sperm and the mother’s egg can, in effect, tip brain development in one of two ways. A strong bias toward the father pushes a developing brain along the autistic spectrum, toward a fascination with objects, patterns, mechanical systems, at the expense of social development. A bias toward the mother moves the growing brain along what the researchers call the psychotic spectrum, toward hypersensitivity to mood, their own and others’. ...

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

In part, this makes intuitive sense. Autism spectrum conditions, including Asperger's Syndrome, have often been described as encompassing "extreme male" behavior -- at least in terms of our stereotypes about how men behave. Similarly, disorders such as anxiety and depression recall stereotypes of femininity. On the extreme end of that spectrum, psychosis and hysteria are conditions that, up through Freud's time, experts believed afflicted only women. Doctors (they were almost all male, of course) thought these diseases were derived from menstruation, ignoring the social factors throughout history that have contributed to women's increased levels of anxiety and depression.

Today, we thankfully understand that men and women suffer from all of these conditions, even if some of them are more prevalent in one gender than the other. It would be fascinating to learn that our parents' genes are locked in an existential struggle to assert themselves in us, not least because it seems to affirm a cultural narrative of war between the sexes. But I'm very cautious about untested genetic theories that seem to map so closely onto our stereotypes about gender. They are so satisfying, so affirming of our biases, that they ought to be treated with extra care and held to a high standard of proof.

Race and IQ

My knowledge of genetic science is limited, but for the sake of conversation, I'd like to point to a series of Slate columns by William Saletan that buy into the theory that black people, on the whole, are less intelligent than whites, who are in turn less intelligent than Asians. Saletan says he's been mostly convinced by race-matters IQ studies, no matter their small correlation values. He points to the smaller brain size of sub-Saharan Africans, and to studies showing that African children develop earlier and grow into more dexterous adults, while whites and Asians are late bloomers with bigger brains.

But after laying out an argument that confirms centuries of racist ideology, Saletan reassures his readers that yes, he's still an egalitarian! After all, many individuals within each race buck the IQ trends. Hey, there are lots of stupid white people! And there's always Barack Obama! (Saletan's example, not mine.) So, despite everything Saletan has just written, he chides readers who might assume it's now okay to judge people based on the color of their skin.

The argument is schizophrenic, not least because while IQ may be a good predictor of an individual's academic and career success, Saletan doesn't grapple fully with the fact that while we know both genetics and environment affect a person's IQ, there's little evidence that genetics are the more important factor. Indeed, as Saletan points out himself in an aside:

Hereditarians admit that by their own reading of the data, non-genetic factors account for 20 to 50 percent of IQ variation. They think malnutrition, disease, and educational deprivation account for a big portion of the 30-point IQ gap between whites and black Africans. They think alleviation of these factors in the U.S. has helped us halve the deficit. Trans-racial adoption studies validate this. Korean adoption studies suggest a malnutrition effect of perhaps 10 IQ points. And everyone agrees that the black-white IQ gap closed significantly during the 20th century, which can't have been due to genes.

Does discussion about possible links between race and intelligence belong in our public discourse? Only if we exercise great caution. Deciding to believe that historically discriminated against Americans are dumber than whites, and then patting yourself on the back for remaining a political "egalitarian?" That doesn't cut it. We should never talk about how American children of different races perform on IQ tests without noting the vast inequalities in access to health care, nutrition, early childhood education, safe schools, and good teachers that still exist -- not in some theoretical society, but right here in the United States. Black children are much more likely to have been born preterm, to be uninsured, and to live in extreme poverty. About two-thirds of black kids attend racially and economically isolated schools, and those who don't are much more likely to be as proficient in math and reading as their white peers, even when they come from poor families.

How can we possibly draw conclusions about race, genetics, and intelligence in America until we significantly close these environmental disparities? Until then, any claim that black Americans are genetically inferior to white Americans is counterintuitive guesswork at best, and nefarious at worst.

cross-posted at TAPPED

Abortion "Eugenics" Debate Gathers Steam

As I was reminded during my travels, the abortion debate is by no means confined to America's borders. I saw anti-choice posters featuring fetuses on the street in downtown Vienna. But that's old-school anti-abortion activism; one newer strategy, in both the U.S. and abroad, is to portray the procedure as a form of "eugenics," whipping up moral panic over the fact that due to advances in prenatal genetic testing, up to 90 percent of expectant parents who receive a definitive prenatal diagnosis of Down syndrome are now choosing to terminate their pregnancies. Now, as Agence France Presse reports (via Kaiser Daily Women's Health Policy Report), Italy is awash in controversy over a botched June abortion in which the wrong twin fetus -- the one without Down syndrome -- was aborted. The pregnant woman chose to abort her second fetus when she learned of the mistake, and reported her doctors to the police. The Vatican's newspaper called the woman's original choice to abort "illegitimate." And an Italian senator wrote an op-ed declaring, "What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics."

The intersection of reproductive justice and disability rights is one of the thorniest in medical ethics, and pregnant women are feeling the pressure on all sides. It shouldn't be presumed, for example, that women of color, poor women, or single parents will be more interested in terminating Down syndrome pregnancies because of fewer resources to care for a disabled child. In fact, in the American Latino community, more parents choose to continue such pregnancies.

But families who do decide to abort -- and who often go into genetic testing knowing they will terminate an affected pregnancy -- should not be pressured to meet with parents raising children with Down syndrome. Such programs are gaining popularity in the Down syndrome community, since parents of kids with the condition are understandably concerned that fewer people with Down syndrome means fewer resources devoted to helping people with the disease. It is this anxiety within the disability rights community that anti-choicers are poised to exploit, even as disability advocates reach out to the pro-choice community in an attempt to increase understanding. If you're interested in learning more about that dialogue, check out this piece of mine from In These Times.

Of course, it's long been an anti-choice tactic to create an acceptability hierarchy of women's reasons for choosing abortion. Remember South Dakota state representative Bill Napoli saying that the only moral abortion would be for a religious teenage virgin who'd been brutally raped and sodomized? The problem, of course, is that most people live in a world not of moral absolutes, but of gray areas, and want their laws to reflect that. That's why South Dakota voters rejected their no-exceptions abortion ban last year. So in a time of increased worry over the uses of genetic medicine, we should be on the lookout for attempts to smear women's choices with the label "eugenics." It's simple common sense that not every family can, at any given point in their lives, accept the burden of raising a severely disabled child, just as not every family can accept the burden of raising any child.

My Child/My Sibling

Hat tip to friends Annie and Lauren: The debate between reproductive health advocates and the disability rights community is usually framed as a question of how far medicine can ethically go to prevent disability without further stigmatizing the disabled. There is deep concern, for example, about the fact that 90 percent of expectant parents who receive a definitive prenatal diagnosis of Down syndrome are choosing to terminate their pregnancies.

Here's a new ethical quandry: The mother of a Canadian little girl born with Turner's syndrome, a genetic condition that results in infertility, has frozen her own eggs for possible future use by her daughter. Of course, if the girl does want children someday, she will have the option of either using these eggs or taking another route, such as adoption. Though sister-sister egg donation is relatively common, this is the first time a mother has donated to a child. And there's concern that having your mother also be your sister could cause "geneaological bewilderment" for a child.

Josephine Quintavalle of Comment on Reproductive Ethics told the BBC, "We have to stop thinking of women only in terms of their reproductive potential. The daughter could live a full and happy life without having children of her own."

-cross-posted at TAPPED

Genetic Disorder

My article on disparities in access to prenatal testing went online today at In These Times. I report on Medicaid's lack of coverage of the most advanced prenatal testing and genetic counseling, which can help expectant parents choose whether or not to undergo screening for diseases such as Down syndrome, and also help them to assess their options in a non-directive way once they receive a prenatal diagnosis.

What is NASA Good For?

At the theater to see "Sicko," I saw the preview for "In the Shadow of the Moon," the predictably feel-good Ron Howard documentary about the Apollo space program of the 1960s. A companion scoffed at the tear-jerker "one human family" theme of the trailer, and suggested that it is almost blasphemous that the United States, where 50 million people are uninsured and over 30 million live in poverty, spends 0.7 percent of its budget, or $16.8 billion annually, on NASA.

Two counterraguments came to my mind immediately: First, I believe scientific exploration is worthy for its own sake and necessary for the continued life and well-being of the human species. Secondly, I would rather see American industry exert itself building space shuttles and high tech scientific equipment than materials for war.

Thankfully, in the June issue of Wired, Gregg Easterbrook helps to refine these points. NASA is "big, dumb, and slow," he writes, but can be put to good use. His four suggestions for NASA are, in descending order of importance:

(1) Conduct research, particularly environmental research, on Earth, the sun, and Venus, the most Earth-like planet. (2) Locate asteroids and comets that might strike Earth, and devise a practical means of deflecting them. (3) Increase humanity's store of knowledge by studying the distant universe. (4) Figure out a way to replace today's chemical rockets with a much cheaper way to reach Earth orbit.

NASA has been canceling sun studies and observations of Earth soil moisture trends in favor of sinking $6 billion annually into the international space station, where, as Easterbook writes acridly, astronauts "take each other's blood pressure." And rather than seek out far-away asteroids that could destroy our planet (the souce of many sleepless childhood nights for me), NASA continues to funnel money toward the American corporations most invested in inefficient and dangerous manned space flight, Lockheed Martin and Boeing.

Call me old-fashioned, but I think the NASA of the 1960s was a national treasure, and it's awesome to think the agency could refashion itself as a beacon of hope in the fight against global warming. Our federal government isn't that visionary very often, but I'd like to see one of the Democratic presidential candidates talk about the possibilities of NASA.