Here Is a Human Being (23 page)

“When the government protects people from lethal drugs, they look like good guys. But when they protect people from information, they’re dangerously close to the people who felt that Gutenberg’s was a bad idea because the printing press gave people information that they shouldn’t have. That was information about the world. This is information about
themselves.”
⁴⁴

Nearly two years later, New York gave a grudging yes to Navigenics, though it demanded that the company operate as a clinical laboratory
⁴⁵
—I suspected it still might be easier to get medical marijuana in Schenectady than a genome scan. Meanwhile, some genetic epidemiologists were still insisting that information could be toxic and that, like Tom Cruise in
A Few Good Men,
we couldn’t handle the truth.

But I had already met plenty of folks who weren’t waiting for anyone’s permission to look at their own DNA. And I would meet more.

I
followed Kay Aull and her bicycle into her first-floor apartment in Cambridge, Massachusetts. The vibe was pure college student: broken doorbell, peeling paint, dubious plumbing, and a thick smell of cat. At the end of the long narrow hallway was the kitchen. Dishes filled the sink; a few picked-over carryout containers sat on the counter. The linoleum was a bit sticky. After putting her bike and, in a show of modesty, her dirty laundry away, Aull filled me a glass of tap water. She was tall and wore glasses. She seemed both to delight in and be slightly self-conscious about her own transparent nerdiness. If there were such an archetype as “an MIT girl” (she graduated with the school’s first biological engineering degree in 2008), Aull might have been one.

My visit to “Chez Kay” was not really about slovenly grad students, their languid felines, or wayward pizza boxes. It was more about the molecular biology laboratory Aull kept in her closet.

Around the time she graduated, Aull learned about a contest sponsored by io9.com, the irreverent science fiction website whose manifesto proudly declared:

The contest called for entrants to build a real synthetic life-form using MIT’s registry of standard biological parts
²
known as “biobricks,” which were essentially bits and pieces of DNA known to perform specific functions: turning a gene on or off, binding a protein, etc.
³
What the io9 judges wanted were folks who would avail themselves of these “parts” and make something functional with them. In other words, they wanted their contestants to be biohackers.
⁴
And what were those? “People who build things in their closet that could eventually do things like replace kidneys or eat oil spills,” Aull told me.
⁵
She built a biological binary counter: just as digital electronic devices use ones and zeros to transmit information or signal events, so too could cells. Aull designed and constructed exactly such a cellular gizmo using biobricks along with bits and pieces she cobbled together herself.
⁶

Aull didn’t win the free trip to Hong Kong to attend the 2008 synthetic biology meeting. But as first runner-up, she managed to impress the judges with what a young scientist could do with five hundred dollars, a couple of months’ worth of evenings and weekends, and a small bit of closet space.
⁷

DNA sequencing had long been falling in price by orders of magnitude; so too had countless other pieces of molecular biology paraphernalia. This enabled Kay to emulate many of the things “real” labs did every day, such as perform the polymerase chain reaction. PCR was arguably the most important molecular biology laboratory technique to emerge in the last twenty-five years.
⁸
As we saw in chapter 5, it allowed one to take vanishingly small amounts of DNA (such as what one might find at a crime scene) and copy it a billion times. This yielded micrograms of DNA, which may not sound like a lot, but is a quantity that was much, much easier to manipulate and visualize. PCR essentially mimicked the way our cells replicated DNA, only on a larger scale. It was absolutely critical for synthetic—and most other—laboratory biology.

To review, PCR works like this: The template DNA sample (that is, the one you’re interested in) is heated to near boiling. This separates the two strands of the DNA molecule (remember Watson and Crick’s double helix—heat makes it unravel). Primers—short pieces of artificially synthesized single-stranded DNA (about twenty bases long)—are included in the reaction and attach to the separated strands of the template; primers serve as pointers that show the enzyme that does the copying where to get started. The temperature is lowered and that enzyme (DNA polymerase) comes along and begins making copies en masse. Within two or three hours, the process is done. A PCR machine is basically nothing more than a heating block: it gets very hot to separate the strands (about 95–98° C), cools to allow the primers to find their mates (about 45–65° C), and then a little warmer to let the enzyme do its Xerox-like business (about 70° C).
⁹

Theoretically, then, if one had some DNA building blocks, primers, and enzyme, one could do PCR with a hot plate, a bucket of ice, and a thermometer. But Kay Aull was unwilling to be
that
much of a do-it-yourselfer (“I don’t want to stand in front of a stove for three hours”).
¹⁰
Instead she found a 1990s-era PCR machine on eBay for fifty-nine bucks. When we met she was very excited because her new gel box had just arrived.
^*
She had ordered this block of Lucite with electrode inputs on the side from DIYBio San Francisco, whose umbrella group aimed to “help make biology a worthwhile pursuit for citizen scientists, amateur biologists, and DIY biological engineers who value openness and safety.”
¹¹
The orange gel box, about the size of a thick airport paperback, looked not much different from what I had used in graduate school in the 1990s. “What’s so special about this one?” I asked, turning it over in my hands. Aull’s eyes widened. “These are an order of magnitude cheaper!” Spoken like a true student of George Church, which of course she had been.
¹²

The rest of her setup was not nearly so high-tech. For an incubator she used a Styrofoam box and a heating element. For a microcentrifuge she stuck a handheld drill through an empty yogurt tub: squeeze the drill trigger and the tub would spin. For enzymes she availed herself of free samples. When the synthetic bio start-up she worked for changed locations (Codon Devices, cofounded by George Church and since reorganized
¹³
), Aull pulled a tube of enzyme and “a couple other things” from the trash.
¹⁴

With the synthetic biology contest over, she was keen to move beyond the esoteric aspects of DIY biology and launch a project with more intuitive appeal, one that might attract both experienced biohackers and newbies. She chose human genetic testing. “I wanted a protocol that would allow other DIYbio users to move away from prepackaged kits and to try an actual project,” Aull said. “In my family people think of these tests as magic. They’re not—you can do this in your kitchen.”
¹⁵

Aull had a personal reason for exploring the subject, too. Her father suffered from hemochromatosis, a disorder that causes the body to absorb more iron than it can store and can take a severe toll on the heart, liver, and pancreas. Hereditary hemochromatosis is an autosomal recessive disease: carrying two copies of a mutation in the HFE gene usually (but not always) causes the body to absorb too much iron. One in two hundred Caucasians carry two mutations; as many as one in eight carry a single mutation. Treatment is easy, safe, and effective: it’s essentially bloodletting—a pint every two to four months for life. The key, however, was to catch patients before their organ damage got too severe. In most cases of classic hereditary hemochromatosis, symptoms didn’t begin until the thirties or forties, although there are rare juvenile and neonatal forms of the disease.
¹⁶

If Aull had two copies of her father’s mutation, she would most likely need phlebotomy treatments at some point. She told me she would also feel the need to inform her mother, to whom she had not spoken since she was a toddler (Aull was twenty-three when we visited). Would she even know where to find her? “I know her name,” she said without emotion. “That’s what Google is for.”
¹⁷

I asked her if her roommates had any objections to her domestic molecular explorations. “They said I can’t keep bacterial cultures in the fridge,” she reported. “Which is reasonable.” The household reached an accord whereby Aull could keep DNA samples in the freezer, which she did, collected in tiny propylene tubes in a small Tupperware container.
¹⁸

Her roommates might turn out to have been more forgiving than Big Brother. In 2009 Aull and several other members of DIYbio received phone calls from Monitor 360, a consulting service whose clients included governments, nongovernmental organizations, and corporations.
¹⁹
Monitor 360 had been asked by a three-letter government agency (“You could probably guess which one,” said Aull) to prepare a report on biohacking.
²⁰
In a post on the DIYbio Google group, Aull noted that her interlocutors were particularly interested in how she dealt with regulatory issues. “I told them the truth: I don’t have permits, and I don’t think the [local regulatory] agencies would have a clue what to do with me if I applied for them.”
²¹
As it happens, Cambridge was the first city to regulate the manipulation of DNA.

The one modest concession to regulation—and self-preservation—Aull made was to set up a limited liability company.
²²
The biological supplies she was using were ordered through and delivered to her company rather than to her. In post-9/11 America, this was probably a good idea. One morning in 2004, University of Buffalo art professor and “bioartist” Steve Kurtz called 911 because his wife would not wake up. Hope Kurtz died in her sleep of heart failure. Had it ended there, the story would have been merely tragic, but not all that uncommon. Instead it took a turn for the farcical, the surreal, and the Kafkaesque. When paramedics arrived at Kurtz’s home, they found the lab equipment and bacterial cultures he used to make art with the Critical Art Ensemble, which explores the intersections among art, critical theory, technology, and radical politics.
²³
Kurtz and Bob Ferrell, one of my former genetics professors at the University of Pittsburgh and the one who obtained the harmless bacterial strains for Kurtz, were both indicted for wire fraud and mail fraud. Kurtz told
Nature,
“The FBI was very thorough about going round to all the cultural institutions and labs we worked with and intimidating and threatening them. It had the effect of almost classifying science to make sure it’s further alienated and pushed away from the public.” Kurtz was finally cleared four years later.
²⁴
Nevertheless, Kay Aull considered “l’affaire Kurtz” to be a cautionary tale about the perils of DIY. Rather than face the feds, “I’d rather spend seventy-five bucks to become an LLC.”
²⁵

The occasional query from law enforcement notwithstanding, DIYbio continued unabated. The PGP’s Jason Bobe cofounded it and remained an active participant: he helped to start the BioWeatherMap initiative along with George.
²⁶
The BioWeatherMap was essentially a community-based environmental genomics effort that was just getting its act together in 2010. The idea was this: Ordinary citizens in different cities and towns would go out and swab public surfaces—doorknobs, hand railings, elevator buttons, dollar bills—with Q-tips and send them to a laboratory. The lab would then extract microbial DNA from the samples and sequence each one. The sequences would be used to identify which organisms are present and presumably what their public health implications are. Much like, say, a pollen count or a pollution index, any given BioWeatherMap will change over geography and time.
²⁷

During our visit Aull came across as more of a sober realist than a mad scientist. In its embryonic state, the limitations of molecular biology as a hobby were still profound. She noted that the local DIYbio meetings were marked by chronic arguments about safety and lab space. For the former there was no standard; of the latter there was simply never enough, at least not for underemployed amateurs. If she had any more disposable income, Aull told me, she would try to move beyond the closet laboratory paradigm. “I don’t have much physical space here. I need a place where it’s out of my roommates’ way and my cat can’t eat it.” She explained that Jake, her cat, had tried to eat one of her gels. “He didn’t get very far—just enough so that it was full of cat hair. Cats are curious like that.”
²⁸

In the coming months Kay’s homegrown results indicated she did not have hemochromatosis but was a carrier. “That was the outcome I was hoping for,” she told me via email.
²⁹
She confirmed it by getting tested through DNA Direct, a commercial genetic testing service.
³⁰
The results meant that she felt no obligation to contact her estranged mother. They also suggested that her father was indeed her biological father. “This could have ended with many more awkward conversations than it did,” she wrote.
³¹
“I was prepared to have them, but I’m glad I don’t have to.”