Biopunks, biohackers, and the movement to own your own DNA

[Eugen Leitl]

http://scienceblogs.com/tfk/2011/05/biopunks_biohackers_and_the_mo.php

Biopunks, biohackers, and the movement to own your own DNA

Category: Biology b" Policy and Politics

Posted on: May 25, 2011 2:07 AM, by Josh Rosenau

On DNA Day, 23 and Me had a sale on their personal genomics service. They'd
do their standard scan of your genome for free, as long as you paid for a
year's worth of their online subscription service.

A much smaller version of that same genome survey would have cost you a
thousand dollars or more only a couple of years ago. For your money, you get
data on single nucleotide polymorphisms at about a million spots in your
chromosomal and mitochondrial DNA: mutations that can tell you about your
ancestors' migrations across the globe, about your propensity for certain
diseases, and about various behaviors and traits, from eye color or hair
color and on to the ability to detect the odd odor some people's urine emits
after they eat asparagus.

For the price (nearly free up front, and a modest cost for the online
community provided), my wife and I jumped on the deal. Since I got the
results back two weeks ago, I've been exploring not only the services and
information provided by 23 and Me, but the various other tools that
individuals have started producing to help analyze and investigate this
insight into my ubiquitous but invisible DNA.

Declining cost of sequencing DNAIn years to come, the ability to learn about
our personal genetic information, and other personal molecular biology, will
only increase. The cost of sequencing DNA keeps dropping, and the level of
detail possible through microarrays like those used by services like 23andMe
keeps growing. At the same time, the amount of information available about
the effects of individual genes and individual gene mutations is rising
rapidly. The possibilities are tremendous, but this is not without its risks.
My genome, for instance, revealed a genetic predisposition towards late-onset
Alzheimers. The odds of getting Alzheimers are still quite small, but
elevated because of this particular mutation to the APOE4 gene. This wasn't a
total surprise, given my family history, and as a healthy, young guy with a
background in biology and biostatistics, it wasn't hard for me to put that
information into a context and move on. Down the road, I'll probably keep an
eye out for new research on Alzheimers medicines and look into tools for
early detection, but I'm not going to kill myself if I forget my keys.
(Thanks to the federal Genetic Information Nondiscrimination Act and the
Affordable Care Act's prohibition on "pre-existing conditions" - not to
mention the inherent uncertainties in translating this genetic result to a
specific outcome - I'm not especially worried about discussing that result in
public).

But I can see how someone with a different background, different family
history, different training, or different genetic risks, might find these
results scary. A 30 year-old woman with certain mutations related to breast
cancer could be advised to undergo prophylactic double mastectomies, a
decidedly fraught decision. Because of that tension, the FDA and Congress (as
well as state regulators in New York and California) have held hearings into
the practices of direct-to-consumer (DTC) genetic testing services like
23andMe, questioning whether the tests should be treated as medical devices,
whether results should have to be passed to consumers through a doctor or a
trained genetic counselor, thus increasing the cost and making the services
inaccessible to folks with low income or without health insurance. Critics
note that most doctors haven't got the background to say anything informative
about the results.

They also raise a more fundamental objection, one at the heart of Marcus
Wohlsen's fascinating new book Biopunk: DIY Scientists Hack the Software of
Life. They argue that our DNA is as much a part of ourselves as our hair
color or height, and that we have as much a right to access and explore that
genetic information as we have to find out about our hair and skin and eyes
and teeth. DNA is not destiny, but it is certainly a key part of who we are,
and we shouldn't have to rely on intermediaries to be able to interpret the
results.

Wohlsen chronicles the nascent movement of folks taking this a step further,
not just using the increasing ubiquity of genetic information to learn about
themselves, but using the increasing ubiquity of molecular biology equipment
and information to turn biotechnology and molecular biology research into a
sort of hobby. Some - like the folks at OpenPCR who I met at Maker Faire last
weekend - are working to make the equipment needed cheaper and easier to
build on your own and to reconfigure and tweak for your own needs. Others are
using results from genetic tests as a basis for research into their own
biology, with one person conducting a small clinical trial among people with
a shared mutation, to help him find out which vitamin supplements would be
most readily absorbed into his body (give his particular genetics), to help
him avert a disease his genetic screening revealed he was likely to
experience. Another biopunk converted her apartment closet into a biotech lab
so that she could create a simple, cheap genetic test for hemochromatosis, a
difficult-to-diagnose genetic disease which affected her father, but which
her insurance company wouldn't pay to test her for.

Most of the biopunks Wohlsen introduces us to aren't trying to cure diseases
or create genetic tests. They surely wouldn't mind if they changed the world
somehow, but their interest in DIY biology is driven more by a sense of
personal exploration and a pure fascination with how things work. The goal,
one of these biopunks explains, is to "increase the tinkerability" of
biology, "simplifying and domesticating" it to make it accessible to anyone
who wants to play with it. Groups like the Bay area's Biocurious aim to
create communal molecular biology labs which anyone can join and tinker in;
Biocurious will open its lab this summer in Mountain View, not far from
Google and the researchers at NASA's Ames facility.

Wohlsen, an AP reporter who covers the Bay Area biotech industry, does a
brilliant job bringing us inside this movement, and exploring the hopes and
enthusiasm of its advocates. He acknowledges the concerns that exist, but
nicely defuses concerns that DIYbio could simplify bioterrorism. A terrorist
could accomplish all they might wish without any of the new technology coming
out, and the supply companies which will sell you custom stretches of DNA and
other essential tools of molecular biology are, by Wohlsen's account, smart
and ethical enough to screen out dangerous gene sequences.

I'm fascinated by this movement for various reasons. Partly because I know
that this is the future, and it's awe-inspiring to see this unfold, to see
molecular biology join insect collecting, bird-watching, and astronomy among
the sciences people bring home as hobbies. There's tremendous power there,
and tremendous opportunity, and I wish I'd paid more attention to molecular
biology in school so I could take part.

But I'm also fascinated because this is the future even for people whose
aversion to biochemistry is even greater than my own. Just as everyone in the
mid- to late 20th century needed some grasp of physics to be able to think
sensibly about nuclear energy, nuclear war, and a host of related issues, the
21st century is sure to be dominated by biology. And DIYbio can play a key
role in democratizing science, precisely because it's more focused on what's
neat than on what's likely to turn up a new Nobel Prize or a new patent and
venture funding for a biotech startup. Its openness will be a great strength
as a tool for improving science literacy, and biopunks know it.

Wohlsen quotes from Meredith Patterson's Biopunk Manifesto:

    Scientific literacy is necessary for a functioning society in the modern
age. Scientific literacy is not science education. A person educated in
science can understand science; a scientifically literate person can do
science....

    Scientific literacy empowers everyone who possesses it to active
contributors to their own health care, the quality of their food, water, and
air, their very interactions with their own bodies and the complex world
around them.

This is a point I constantly return to in my own work on evolution education.
Within the lifetime of a student in high school today, the cost of genome
sequencing will surely drop low enough that a genome sequence will be a
standard part of everyone's medical chart. To understand that wealth of
information, doctors and patients will need to be able to understand the
common ancestry of life, and the evolutionary forces driving the differences
in genes and their effects between humans and model organisms like mice and
flies and roundworms. Increasingly, doctors without that context will be
worse doctors, and patients without that context will be worse patients: less
involved in their own care, and less able to understand the advice their
doctors will be giving them. They'll be less able to understand new
discoveries when they are reported in mass media. They'll be cut off from an
essential part of themselves.

It's clear that Wohlsen, like me and the opponents of FDA regulation of DTC
genetic testing, agrees with the idea that this information is and must be
our own, to play with and interpret as we see fit. Biopunks, with their
commitment to the idea that "knowledge set free will empower everyone," are
trying to change society and prepare it for the potential of the revolutions
happening in biology today.

Wohlsen summarizes:

    Do-it-yourself biotech strives to bring biotech out of these closed-off
[academic and industrial lab] spaces and give it to the public. Whether the
public actually wants to have it is another question. Do-it-yourself
biologists believe they should want it, if only because they have a right to
it. Here, DIYers say. This is yours. Because DNA is us.

    ...

    Biopunks have not achieved any major scientific breakthroughs. Maybe they
never will. But they all exhibit a goofy joy in what they do, like they're
getting away with something. Because rather than wait for science to be done
to them, they have decided to do science.

That's a vision I agree with, and a movement I want to be part of. Most of my
reason for getting my own genetic analysis was precisely so I could explore
these same ideas, and so I could have first-hand experience that could inform
my opinion on policy decisions being made today which will affect the future
of this fascinating movement. Whether or not you decide to look under the
hood at your own DNA, I'd encourage you to read Wohlsen's book and think
about the issues it raises.