When geneticist Hugh Rienhoff's daughter Beatrice was born six years ago, he noticed a few traits that differed from his other children. She seemed a little floppy, her feet were slightly bigger than usual, and her fingers didn't seem to stretch completely open. In the months to come, she ate well, but didn't gain a commensurate amount of weight. Although Rienhoff had left clinical genetics to join the venture capital and commercial biotech worlds, concern about his daughter pulled him back in. After consultations with experts didn't bring a satisfactory answer about the cause of her disease, he took matters in his own hands. He built a lab in his attic and started sequencing her DNA.
Although his work hasn't yet established a definitive diagnosis or cure, his increased understanding of his daughter's biological pathways did lead her doctor to put her on a drug which strengthened her skeletal muscles. He's also created a digital community at mydaughtersdna.org where other parents of children with unusual syndromes can share information. According to an article in Wired, when a Bulgarian man posted information about his 12-year-old daughter's symptoms–inability to shed tears, speech problems, and weak limbs–a geneticist responded by correctly suggesting that the girl should be tested for Triple A syndrome.
A soft-spoken man with great affection for his children, Reinhoff has taken his quest on the road. On Youtube, he can be seen speaking to Google employees. I ran into him a few weeks ago at a UCLA Conference entitled “Outlaw Genetics.” For me, his most compelling comment was about the cost of equipping a home laboratory. While a new gene sequencer might run $80,000 to $100,000, the equipment becomes obsolete so rapidly that Reinhoff's entire home lab cost only $2000.
The $2000 price tag means that the tools of biotech have become widely accessible. The UCLA Conference celebrated this democraticization of science. Speaker Meredith Patterson described how she'd created a basement lab and is using low-cost, off-the shelf techniques to genetically modify Lactobaccillus acidophilus, which live in the human gut. Her goal is to create synthetic lactobacilli in yogurt to prevent scurvy.
The conference included a day-long hands-on session, in which we attendees isolated DNA from strawberries, painted with luminescent microbes, and used a computer rendering program to create DNA nanotechnology. The seduction of the technologies was not mirrored with regulatory concern, however. What would happen if Patterson’s self-proclaimed "biohacking" went amuck and transferred harmful bacteria to humans? UCLA's Debra Greenfield took up the Outlaw theme of the conference and pointed out that some of the classic outlaws were bank robbers. She noted that none of the speakers raised the financial aspects of these interventions–who would win, who would lose. When speaker Jason Bobe tried to convince people to turn over their DNA for scientists to use in the Personal Genome Project, he failed to acknowledge that the scientists might run roughshod over people's altruism and patent the donated genes.
Do-it-yourself genetics can enhance our scientific literacy and allow us (like the 19th century naturalists) to make scientific discoveries without formal training. It can demystify genetics and help us to not fall for biotech hype. But the presence of FBI recruiters at the UCLA meeting reminded me of the darker side. If parents, artists, and biohackers can readily put the technologies to aesthetic and beneficial uses, those with more nefarious motives can use the same technologies to create great harm.