Germany Limits Genetic Testing

Via Rebecca Skloot, the AP reports that Germany is moving to limit genetic testing:

Under the law, genetic tests can only be carried out by a doctor and require the full consent of all parties involved. That makes it illegal to conduct anonymous paternity tests and anyone found in violation could be fined up to euro5,000 ($6,525).

The law further limits the use of genetic testing on fetuses to purely medical purposes, meaning parents are prohibited from using it to determine the sex of their unborn children. In addition it prohibits the use of genetic testing for indications of a predisposition to illnesses that appear only later in life, such as breast cancer or diseases of the nervous system.

As long-time readers know, I've been calling for greater regulation of assisted reproduction technologies for some time now. Germany, and Europeans in general, are years ahead of us when it comes to grappling with the consequences of these technologies.

Thursday Morning Links

There's a lot of interesting stuff to read this morning.

1. More troubling violence in Iraq, as sixteen Iraqi soldiers die in a suicide attack in Anbar province.

2. This is very interesting; George Mitchell, U.S. Middle East envoy, is in Israel today. The Christian Science Monitor reports that the Obama administration will communicate to Israel that they intend to link the issue of Iran's nuclear program to illegal Israeli settlements. As in, if Israel wants help with Iran, they're going to have to make concessions on settlement activity. That message probably won't go over very well.

3. More on the "truce" with the Taliban in Swat: unsurprisingly, militants who pledged to surrender their arms...aren't.

4. Science news: researchers report setbacks in their explorations of the genetic underpinnings of many inherited diseases. Apparently, it's impossible to link some common conditions (like Schizophrenia) to one or two genetic markers. Scientists suspect that interactions between a countless number of genes can produce or make people vulnerable to disease, making it considerably more difficult to predict the possibility of disease in certain individuals, as well as fashion targeted treatments. Also, Nicholas Kristof (who's had some great columns recently) writes about recent research showing that the IQ's of poor children living in chaotic households suffers, and has suggestions for what we can do about that. And lastly, the "last voyage" of an astronaut whose job has been to tend the Hubble Space telescope, a scientific achievement that has made incalculable contributions to our understanding of the universe.

5. Jonathan Capehart dismisses the tired arguments for intolerance that underpin opposition to allowing gays to serve openly in the military.

6. Legislation that would create a new University of North Texas law school in Dallas passes the Texas Senate, but could face stiff opposition in the House. Despite the downturn in the legal market, I'm not entirely opposed to the idea. North Texas could use a less expensive public law school, and unless we really are in the Great Depression II, the economy should improve in time for the first graduates of the school. Still, it seems like a difficult time to ask for money to produce lawyers who right now couldn't find jobs.

7. John Madden to retire after thirty years in the booth. Madden's an easy target for ridicule, but I've always liked his earnestness and his understanding of the game. Clearly the guy loves football, and has always done a good job of explaining the game to football amateurs like myself. He'll be missed.

8. Bonus music review: the new Metric album "Fantasies" came out on Tuesday. It's good. The hooks are catchier, the themes are gloomier, and song structure is tighter. I especially like the darker and fuzzier synth sounds, which give the album a somewhat more ambient feel. On other Metric albums I've found there's usually 2-3 good songs and a lot of filler. Not so here; all the songs are keepers. Anyway buy it, or listen to it here.

Behind the Curve

Kevin Drum is a little cavalier about the prospect of "designer babies":

I confess that this particular controversy has always perplexed me. If, for religious reasons, you flatly oppose the creation and destruction of embryos, then I disagree with you but I understand your objection. Outside of that, though, who cares if parents start selecting for left-handed saxophone players with a gift for languages? It's true that as the technology progresses, it will probably become possible to perform more problematic types of screening — perhaps for behavioral traits like sexual orientation or political persuasion — but there's every reason to think that this is a lot harder than it sounds no matter how good the technology gets. And in any case, parents already select for these traits constantly when they make decisions about how and where to raise their children, and nobody objects to that.

In short, what's the big deal? Which is fine at the outset at least, because nobody really thinks it's all that evil for anybody to want their kids to have blue eyes instead of green. The problem of course, is that parents aren't stopping there. Like many, Kevin doesn't seem to realize that parents are already utilizing IVF to select for characteristics that aren't nearly as insignificant as eye color. In fact, some parents have gone so far as to use reproductive technology to create children with disabilities (deafness in one case.) Kevin's dismissive of concerns over kids with pre-selected eye color, but we're already past that point.

The problem with this of course is that our laws haven't kept up. That appears to be largely because people like Kevin Drum (and many others, to be fair) don't seem to realize what doctors utilizing reproductive technologies are already capable of (and doctors are only now realizing what risks these procedures entail.) Now it's entirely true that it's only a tiny minority of parents who would be so brazen as to design a child to be born with a disability, but we don't fail to pass laws against child abuse just because it's a tiny minority of parents who abuse their kids. It's past time for state legislatures to address this possibility, and past time for us to have a real public debate on the matter.

On Artificial Faces

Sometimes, science is truly incredible. Doctors performed the first face transplant in the United States last year, and now a pair of American researchers is proposing artificial muscles for patients who've suffered severe facial paralysis. The muscles, crafted out of artificial polymers, would respond to electrical signals just as human muscles would. 

Freewheelin' Fertility Clinics

I've avoided this story mostly because of the sensationalism that surrounds it, but I think this article in today's NY Times is worth a read. Everybody seems most hung up about the idea that this woman might collect public entitlement benefits, as if people in the U.S. don't routinely have kids they can't afford to support, but the really troubling aspect of the story is that fertility clinics operate in what is essentially a legal vacuum:

Nearly a third of in vitro births involve twins or more. The government, along with professional associations, have been pushing fertility doctors to reduce that number, citing the disastrous health consequences that sometimes come with multiple births — infant mortality, low birth weights, long-term disabilities and thousands of dollars’ worth of medical care.

The American Society for Reproductive Medicine, the association of fertility doctors, even adopted guidelines in 2008 encouraging the transfer of only one embryo for women under 35, and no more than two, except in extraordinary circumstances. The guidelines allow more for older women, up to a maximum of five.

But unlike some other countries, the United States has no laws to enforce those guidelines. The Centers for Disease Control and Prevention has a surveillance system that collects data on fertility clinics, but reporting is voluntary and there are no government sanctions for not reporting.

As a result, experts say many doctors are still implanting too many embryos to increase the chance of pregnancy. Only 11 percent of in vitro procedures in the United States involve single embryos, according to 2006 data from the C.D.C.

Given the expense, time and discomfort involved in a single IVF procedure, it's not unexpected that both couples and doctors would hedge their bets and hope to get multiple children at once (so as to avoid a future procedure to have more children) or increase their odds of getting at least one child out of the process. Even so, guidelines provided by the ASRM advise doctors to implant only one embryo because multiple births are frequently risky for the fetuses. The problem of course is that clinics frequently have a strong incentive to implant more than one embryo, money:

The industry has doubled in size in the decade since the C.D.C. started collecting data in 1996. That year, 64,681 procedures were performed in 330 clinics. At last count, the number of procedures was up to 134,260 and there were more than 483 clinics across the country. More than 50,000 children a year are born as a result of in vitro fertilization in the United States. Nationwide, it is a more than $1 billion business.

[...]

Part of the reason doctors might acquiesce to a patient’s wish could be the fierce competition in the industry. California has more doctors performing in vitro fertilization than any other state, with many concentrated in the Los Angeles area.

The competition means that sales pitches are not unusual.

The Huntington Reproductive Center offers a refund for some women. No pregnancy? You get 90 percent of your money back.

Want to predict the sex of your baby? That is 99.99 percent guaranteed at the Fertility Institutes.

Dr. Kamrava, Ms. Suleman’s doctor, had previously raised eyebrows in the industry by advocating a procedure called SEED — subendometrial embryo delivery, in which he said he could increase pregnancy rates by using a plastic tube to insert embryos under the lining of the uterus for maturation, rather than in the uterus. The procedure’s value was never scientifically proven, according to Dr. Potter.

So, competition encourages fertility clinics to push ethical boundaries and what discouragement they have from engaging in iffy procedures are "guidelines" provided by a professional organization, and laws in the few states that bother to regulate IVF. I've written about this phenomenon before, but it continues to boggle my mind. When it comes to terminating a pregnancy we're willing to have grand national debates, go to court, and plant bombs over the issue, but when it comes to initiating a pregnancy that might result in multiple births, selection for certain traits, or deformity, the only thing anybody seems to worry about is whether people can pay for their own kids or not. How is that?

FDA Approves Stem Cell Tests on Humans

In what will hopefully open a new era of science and medicine, the FDA has approved of a study that will test embryonic stem cells on adults with severe spinal cord injuries, in the hopes of regrowing damaged or destroyed nerve cells.

Kidney Theft

When somebody can make a buck by going to India and stealing some poor guy's kidney then yeah, it's time for reform of the organ donation system. A market is one way to go, if you think it's okay to make a buck off an organ as long as it's procured legally. Another method might be for the government to pay donors or their families for their organs. Or there's the approach Britain is considering adopting, instituting presumed consent and requiring people to opt-out of the organ donation system. But a system in which thousands die each year for want of organs that are simply put in the ground to rot, something has to be done.

Disability is not Diversity

Former Post reporter Patricia Bauer is the mother of a child with Down Syndrome, and today she takes to the pages of the Post to attack the notion that a life with Down Syndrome is not worth living:

As a result of recent changes in technology and standards of care, women are undergoing prenatal diagnostics for Down syndrome in unprecedented numbers -- often multiple times during their pregnancies. When the condition is detected, they are having abortions at rates that are thought to approach 90 percent.

Those of us who actually have relationships with people with Down syndrome, and who see them achieving and thriving in their communities, view this paradox as baffling at best, tragic at worst.

We cherish our friends and family members and think their unexpected extra chromosome is not the most important thing about them. And we worry that the relentlessness of genetic testing is amplifying stigma and bias against the 350,000 flesh-and-blood Americans who have the condition, as well as people who have other conditions that are now or soon will be prenatally discoverable.

In recent conversations with obstetricians and gynecologists, I've found that we family members aren't the only ones with these fears. Physicians say they're disturbed by mounting demands from prospective parents for nothing less than the "perfect" child, and by lawyers who troll for lawsuits against doctors who have the misfortune to deliver nonstandard babies. Not long ago, a Florida jury awarded a couple more than $21 million when their doctor failed to detect an obscure genetic condition prenatally.

She then goes on to propose some recommendations for how doctors should deal with couples facing the prospect of having a child with Down syndrome and closes with this sentence:

In the meantime, I'll keep hoping for acceptance of genetic diversity. That would be the best resolution of all.

And that's where she loses me completely. In no way do I believe that the disabled-even those profoundly disabled-do not have a right to life, cannot enjoy life to some satisfactory extent even by a highly subjective measure, or should not be brought into the world by parents who decide to have them. But the idea that we should encourage parents to bring disabled children into the world in the interest of "genetic diversity" is absurd. Disability is not diversity. The idea that disabled people are objectively "defective" (and I use the world in a clinical sense) in some manner, does not at all mean that they are less worthy of life than non-defective people. I understand that throughout human history, there have been societies who thought so: neither the ancient Spartans nor the more modern Nazis thought much of killing the disabled at birth or later. And I understand that even in our society, there are those who-if they don't quite discriminate against the disabled-still regard even only the physically disabled as "lesser" humans than the rest of us. But the antidote to this backwards and uneducated thinking is not to argue that the disabled are only "different" from the rest of us and that we should actively encourage disability in the name of diversity.

For one, there's absolutely nothing wrong with parents terminating a pregnancy that will result in a disabled child. A disabled child is without question a child that will be more burdensome to the parents. That some parents choose willingly to accept this burden in exchange for what they see to be offsetting benefits, does not mean that all parents should feel obligated to so choose. While some may lament the loss of a potential person whose life would still have been meaningful and fulfilling, the fact remains that such loss will be replaced with the potential for another person whose life will be meaningful and fulfilling, only without disability, and that potential is lost when parents elect to have a disabled child.

Second, from the idea that more disabled people equates to greater diversity flows naturally the conclusion that there should be more disability in the world than there is as present, and that people should actively seek to produce disabled children. This is not just a slippery slope argument, as is demonstrated by the deaf couple that utilized in vitro fertilization to deliberately produce deaf children. They felt justified in doing so because they feel strongly that they have an obligation to preserve "deaf culture" by having deaf children.

Such an idea is reprehensible. That people who are born with certain disabilities share a community and fellowship with other people in similar circumstances is no surprise, nor should it be discouraged. But the idea that deafness is a "culture" that should be preserved by producing deliberately disabled children is ridiculous; by whatever measure, a deaf child experiences less of life than a child whose hearing is normal. That a child who is naturally born deaf can experience life just as richly in other ways does not mean that a child should be created who is required to overcome deafness.

For thousands of years men and women have had no choice but to endure the accidents of nature that produced disabled children, with little hope of treating the most disabled, let alone any hope of understanding what produced the disabilities and how such a process could be circumvented. But thanks to decades of medical science and advances in the understanding of genetics we stand on the threshold of a world in which disability can be relegated to history, where everyone has the chance to born fully capable of exercising all human faculties, senses and abilities. It would be grossly irresponsible and harmful to our future children to let this idea of disability as diversity stand in the way of that world.