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The companies that brought you tracking devices for stolen cars and lost animals have found a new market: tracking human beings.
Radio tracking devices, as Philip Shishkin notes in the Wall Street Journal, were initially placed on endangered animals. More recently, LoJack has installed them in more than 7 million vehicles to foil theft. Some 2,000 to 3,000 police departments have receivers to pick up signals from the devices. Why not extend that network to track people?
In fact, two companies have already put radio monitors on 18,000 people with Alzheimer's or brain injuries. Now LoJack is joining the market in a big way. Yesterday, the company announced a "diversification strategy" to "track and rescue people at risk of wandering, including those with Alzheimer's, autism, Down syndrome and dementia."
The Alzheimer's market looks pretty lucrative. LoJack anticipates up to 16 million Alzheimer's patients by 2050, most of whom wander away at some point. But the company also notes that "autism, which is the fastest growing developmental disability that now afflicts one in every 150 babies born, can also cause children to wander." In fact, LoJack aims to address the whole range of potential wanderers. According to CEO Ronald Waters, "This offering is a natural extension of LoJack's family of products and services and takes our solutions beyond ‘getting the bad guys' off the streets to now protecting those afflicted with cognitive disorders."
Who's going to have the receivers to track all these people? "Law enforcement/public safety agencies," says Lojack. And who's going to buy the devices and put them on the people who will wear them? You can't expect a cognitively disordered person to take that kind of initiative herself. As an Illinois sheriff points out to Shishkin, "The people who need the technology are often too embarrassed to ask for it."
There's no question that these devices save lives. Without them, some people will wander off, get lost, and die. And if your family can't track you, they might resort to keeping you indoors so you don't wander. But "cognitive disorders" can also become an expanding rationale for putting more and more people under constant police surveillance. In the spirit of mutual tracking, let's keep an eye on it.
Slate V: Beware Everlasting Jellyfish!
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On Friday I wrote about homosexuality, polygamy, and incest. The gist of the piece was that our categorical bans on these practices are losing their justification. As societies embrace privacy, the acceptable basis for restricting sexual behavior has been reduced to harm. And the evidence that these practices are harmful is weak.
In the case of incest, I looked at the scientific objection -- inbreeding -- at a level one step removed. That is, not in brother-sister coupling, but in cousin marriage. This is an emerging controversy in Britain, thanks largely to immigration from Pakistan, where the practice is common.
Over the weekend, two more articles on this topic appeared in the British press. Let's take a look at them.
First, an estimate of the scale of the practice. "Over a billion people worldwide live in regions where 20%-50% of marriages are consanguineous -- that is where the partners are descended from the same ancestor," reports Emma Wilkinson of BBC News. In Britain, Wilkinson cites an unfolding study in Bradford, where half the kids are from Pakistani parents. A pediatrician at the local teaching hospital reports that 70 percent of the first 1,100 Pakistani women recruited for the study are offspring of consanguineous marriages.
Second, some political background, courtesy of Ian Sample in the Guardian. Three years ago, a member of parliament from the left-leaning Labour Party was denounced for suggesting that cousin marriage should be discouraged as a genetically harmful practice. "We have campaigns about the health effects of drinking, smoking and overeating," the MP pointed out. Why not mount a similar information campaign about cousin marriage? A few months ago, a second MP echoed this argument and was rebuked by the prime minister's office.
The actual risk-multiplication effect of cousin marriage isn't clear. A study I cited six years ago concluded that having a child with your first cousin increased the risk of a significant birth defect from about 3-to-4 percent to about 4-to-7 percent. Wilkinson cites data showing that "since 1997 there have been 902 British children born with neurodegenerative conditions and 8% of those were in Bradford which only has 1% of the population." This appears to be the basis for Sample's report that "rare inherited brain disorders are eight times higher among Pakistani children born to married cousins than those born to unrelated parents." But Wilkinson adds that Australian geneticist Alan Bittles, supposedly the top expert on this subject,
has collated data on infant mortality in children born within first-cousin marriages from around the world and found that the extra increased risk of death is 1.2%. In terms of birth defects, he says, the risks rise from about 2% in the general population to 4% when the parents are closely related.
If Bittles' numbers are correct, they substantiate a somewhat embarrassing point made by defenders of cousin marriage. Embarrassing, that is, to all of us good Western folk who turn up our noses at the practice. The British Down's Syndrome Association has posted a chart showing the risk of producing a baby with the syndrome at various maternal ages. From age 20 to age 31, the risk doubles. From 31 to 35, it doubles again. From 35 to 38, it doubles again. From 38 to 41, it more than doubles again. Each delay multiplies the risk as much as cousin marriage multiplies the risks of all birth defects combined. By age 45, the probability of Down syndrome alone roughly matches the 4 percent cumulative risk of birth defects from cousin marriage.
Which brings us to the Elizabeth Edwards question. As Suz Redfearn reported in Slate four years ago, Edwards gave birth to her two youngest children, Emma Claire and Jack, when she was 48 and 50. Redfearn thinks Edwards used donor eggs. Edwards won't say. If Edwards used her own eggs, the Down syndrome chart puts her probability of the disease at 1 in 11 for Emma Claire and 1 in 6 for Jack. That's two to four times the risk of any birth defect from cousin marriage.
Should women be allowed to have babies well into their 40s? If so, how can you justify restrictions on cousin marriage? For that matter, what about sibling incest? Theoretically, given a pool of recessive disease genes, reproducing with a sibling instead of a first cousin quadruples the risk of defective offspring. This probably overstates the actual effect, since population studies don't show quadrupling as degrees of consanguinity increase. But even if the birth-defect rate is a worst-case 17 percent, that's no higher than the risk of Down syndrome at the age when Elizabeth Edwards had her fourth child.
For what it's worth, it looks as though Britain may take a middle course: no legal restrictions on cousin marriage, but no indifference, either. Bittles and others are proposing to reduce birth defects through counseling, genetic screening, and public education in communities that practice cousin marriage.
My guess is that this is how governments will manage unconventional sex practices in the next century. We can't stop people from doing what they want to do. We'll tell them what's generally dangerous. And if they can adequately reduce the medical risks, by wearing a condom or taking a genetic test, we'll look the other way. We'll speak the language of science, or none at all.
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My colleague Jack Shafer says the Pulitzers are a fraud. "There's no real science or even fairness behind the picking of winners and losers," he wrote in a piece published four years ago and reprinted last week, after this year's winners were announced. In particular, he noted, "I doubt that one newspaper reader in 10,000 could tell you a day after the Pulitzers are awarded who got the prize for explanatory reporting."
Well, never argue with Shafer. Except this once. The winner of this year's prize for explanatory reporting deserved every bit of it, not just for her terrific writing, but because, for the past two years, she's been pioneering the journalism of the next century.
The prize announcement salutes Amy Harmon of the New York Times for her "examination of the dilemmas and ethical issues that accompany DNA testing." Harmon's series, "The DNA Age," has actually covered far more than that. It began two years ago and has weaved its way through a thicket of emerging controversies. Her opening topic was people who used DNA tests to establish unexpected ancestry—such as whites claiming to be black, or Christians claiming to be Jewish—in order to gain the ensuing advantages in areas such as minority admissions, Israeli citizenship, or Native American entitlements. Then she turned to the psychological and social effects of studies that tell us much of our behavior is genetically influenced.
Harmon wrote about the moral deliberations of couples who used preimplantation genetic diagnosis to weed out embryos that might carry or pass on diseases. She talked to parents of Down syndrome kids, who worried that the eradication of Down fetuses by prenatal tests would turn their children, in the public's mind, from disabled people into freakish burdens that should never have been brought to term. She detailed our increasingly methodical genetic engineering of dogs as a potential preview of genetic engineering of human beings. She introduced us to women who had healthy breasts surgically removed based on genetic predictions of cancer. She explored fears that analyses of average genetic and trait differences among populations might foment a "new era of racism." She chronicled the emerging ability to Google your own DNA. She wrote about families who use the Internet to find and bond with other families over shared genetic disorders.
Last month, Harmon looked at "genomic elitism," the practice among rich people of paying hundreds of thousands of dollars for a full DNA analysis normal people couldn't afford. And a week ago, she scrutinized "surreptitious sampling," the law-enforcement technique of obtaining incriminating DNA samples by testing cells and fluids you inadvertently leave in public places every day.
Half of what's amazing about this body of work is that nobody else has done anything quite like it. In retrospect, the trends Harmon has covered will be recognized as the story of our age. We're living in an era of science and technology. Discoveries about ourselves and the world, coupled with our increasing power to transform both, are changing how we live, what we think, and who we are. This is happening at a pace unheard of in previous generations. In Sunday's Washington Post, another of my favorite science writers, Joel Achenbach, points out:
The most important things happening in the world today won't make tomorrow's front page. They won't get mentioned by presidential candidates or Chris Matthews or Bill O'Reilly or any of the other folks yammering and snorting on cable television. They'll be happening in laboratories—out of sight, inscrutable and unhyped until the very moment when they change life as we know it. Science and technology form a two-headed, unstoppable change agent.
The fact that such developments are now being recognized by the Pulitzer board and are blanketing the Post's Sunday opinion section is, in itself, good news.
But that's only half the reason to applaud Harmon's award. The other half is the way she has covered—or, in her case, invented—the beat. Lots of writers, including me, have opined about the abstract virtues or evils of biotechnology. We think we're being visionary or "morally serious." But real moral seriousness isn't about abstractions. It's about flesh and blood: the real people in whom, and in whose lives, the abstractions take shape. You can't really understand or explain abortion, war, or economic globalization until you've talked to people who have been through it. The same is true of biotechnology. If you go in with moral assumptions, the experiences you see or hear about may change your mind, or at least complicate it. That's part of the point of reporting, not to mention reading.
I can't do justice to "The DNA Age" in a blog post. Read it for yourself. It's as provocative as any sci-fi collection and as nuanced as any novel. Except it's real.