by Jessica Cussins
Sitting down to watch the science fiction film The Perfect 46, I had the strange sensation of walking through a hall of mirrors. Intriguingly meta-conscious, and perceptibly close to reality, this film highlights the world of direct-to-consumer (DTC) genetics and makes it clear that this technology, now at our real-world doorsteps, could drastically shape our very near future. [Emphasis - DNI]
The story centers on the aptly
named company ThePerfect46, which starts off with a
seemingly innocuous mission. Taking advantage of the fact that most Californians have had
their genomes sequenced by this undefined point in time,
it simply offers to analyze a couple’s genomes alongside each other to determine their
ability to have a disease-free child.
But founder and CEO Jesse Darden isn’t
content to stop there. In a move that sparks internal controversy and leads to
one staff person abandoning the project, he rolls out version 2.0, which
allows the company
to search through giant databases and match random people together based solely
on their ability to create genetically “ideal” children.
The film cuts back and forth between a tense situation unfolding for Darden,
flashbacks of his life, and a documentary film made about his rise and
fall.
While The Perfect 46 is a fictional film, it is being promoted by a real-life
website purporting to actually sell ThePerfect46
product (kudos for the
smart marketing ploy!).
Darden, played quite well by Whit Hertford, is the star of The Perfect 46. He is a Steve Jobs-esque
anti-hero: the disliked techie genius, the man behind the company that aims to improve
humanity but ends up causing great harm.
Darden comes
across as “a tortured
genius… a character that can be lauded and loathed in equal measure.” He is
romanticized as
smart and entrepreneurial, but his considerable personal and inter-personal
flaws are never out
of view.
Perhaps by now both Darden and
ThePerfect46 sound strangely familiar. If so, it’s probably because the
similarities to
companies and products that actually exist right now are jarring. This is a kind of science
fiction that is only just barely fictional.
In fact,
writer and director Brett Ryan Bonowicz calls The
Perfect 46 “science factual.” He invited a number of researchers to be
consultants on the film and strove to show “a respect for science.” The
scientific community has applauded his use of “authentic
science” and raved about how the film is “a refreshing
change of pace” because it
doesn’t dissolve into a dystopian nightmare. Here Bonowicz elaborates on why he pursued this
approach,
In fact, you may find reality to be even more bizarre than this particular fiction. Just last year, the infamous DTC genetics company 23andMe received a patent for "gamete donor selection based on genetic calculations." The premise of the technology was that it could allow people to choose a sperm or egg provider based on probabilities of having a child with the kinds of characteristics they desired including “height, eye color, gender, personality characteristics and risk of developing certain types of cancer.” In response to backlash from the media about its “designer baby patent” with drop-down menus of characteristics, 23andMe assured everyone that it no longer had any plans to pursue the full range of possibilities described.
Another company, GenePeeks, has remained undaunted. GenePeeks launched just months ago, founded by molecular biologist Lee Silver, who writes broadly about how positive eugenics is both laudable and inevitable, and Anne Morriss, the mother of a sperm donor-conceived son who inherited the rare recessive disease MCADD.
GenePeeks’ “Matchright” is remarkably similar to the product offered by ThePerfect46. For $1995, “GenePeeks digitally combines your DNA and the DNA of potential donor matches to create a preview of thousands of personal genomes that your child could inherit, focusing on a panel of genes involved in childhood health and disease.” Based on this information, you can then preview your personal “catalog” of donors and further weed them out based on your preference for such characteristics as height, eye color, hair color, education level, and ethnicity.
What GenePeeks hasn’t marketed yet is its ability to test for much more than “health and disease.” But the patent it was awarded in January explicitly lists many non-medical traits: aggression, weight, breast size/shape, drinking behavior, drug abuse, eating behavior, ejaculation function, emotional affect, eye color/shape, hair color, height, learning/memory, mating patterns, sex, skin color/texture, and social intelligence, among others. It is thought to be possible to screen for just some of these traits, but all are covered by the patent.
Furthermore, GenePeeks doesn’t intend to limit its availability to sperm banks. It plans to expand soon and become available for “anyone planning a pregnancy in advance.” Of course, there is at least one fundamental flaw in the methodology of all these schemes: two people can have an infinite number of children with a full range of characteristics. Choosing a “preferred” donor can’t possibly absolve all risk.
In fact [spoiler alert], in The Perfect 46, a bug in the company’s algorithm results in the birth of 24 children with a severe genetic disorder. The horrific mistake causes the company to close its doors and forces Darden into solitude, where he continues to develop his work and reflect on what went wrong. What is perhaps most remarkable about the scenario is that no one is ever found to be at fault, even when some of the children die, and at least one suicide results. While Darden is depicted as a broken man, devastated by the fault in a system he designed, he is relatively unmoved by personal stories, including one about a loving couple that divorced after hearing they were “incompatible.” In his mind, “Just because I created something doesn’t mean I’m responsible for how people use it.”
Is this the kind of language that will be used around technologies governing life and death in our market-driven culture? The film probes many such important questions. How quickly does the right to know become the responsibility, or even the requirement, to know? What will people do with this information? And what happens, and who is accountable, when it is wrong?
(If 23andMe is anything to go by, some information will be wrong.)
Furthermore, can changing the kinds of people who are born really be considered “preventative medicine?” When recommendations about who is “fit” to be born are made by a commercial entity, does the absence of state involvement make the actions less eugenic? Is “perfection” what we ought to strive for? If so, what do we make of the founder – who is anxious, anti-social, awkward, not good-looking, and in the end, in “an irony that was lost on no one,” infertile?
The desire to know and control more, even when the meaning of the knowledge and our ability to control it is imperfect, can be powerful. But while it makes marketing sense for drug and genetic testing companies to pathologize more and more conditions, it probably doesn’t make sense for us. As these technologies become increasingly present in our lives, that point risks getting lost.
GenePeeks has just received $3 million in financing. The concept of adding genetic profiles to dating sites seems to be gaining steam. These trends suggest that this film could well be “more of a glimpse of the future than simply a hypothetical conversation about ethics and genetics.”
But if The Perfect 46 is “a sort of prequel to Gattaca,” hopefully we will find a way to stop short of that future.
You can find upcoming screenings of this thought-provoking film here, and check out CGS’s personal genomics news page here. Can you make it through the hall of mirrors, discerning the difference between fiction and reality?
[Note: The burning question remains: Can they really decode anyone’s genome? Answer: No.
Remember that the “human genome” is defined as the total DNA in both the nucleus and the mitochondria outside the nucleus of a cell. Aside from the fact that only about 15% of “THE” Human Genome has still only been decoded (along with problems like individual genomes are unique; the sample consisted of mixing multiple samples from people around the world; only the nuclear genes, and only their extrons, were addressed, etc. (see: http://web.ornl.gov/sci/techresources/Human_Genome/project/index.shtml), what about that part of an individual’s genome provided by the person’s mitochondria? And what about the 85% of the nuclear genes in an individual’s cells that was called “junk DNA” in the “introns” of those nuclear genes until lately? Are these “kits” even capable of determining the mitochondria and the “junk DNA” in those “introns”? See, e.g.:
-- “DNA is actually not well understood. 97% of human DNA is called ³junk² because scientists do not know its function. The workings of a single cell are so complex, no one knows the whole of it. Yet the biotech companies have already planted millions of acres with genetically engineered crops, and they intend to engineer every crop in the world.”
Genetic Engineering and “Junk” DNA, Genetic Engineering, at: http://www.authorstream.com/Presentation/ramyasekaran-1541143-genetic-engineering/
-- The Astonishing Powers of "Junk" DNA
http://www.khouse.org/enews_article/2012/1982/
-- Most of What you Read was Wrong: How Press Releases Rewrote Scientific History, Center for Genetics and Society, at:
http://www.geneticsandsociety.org/article.php?id=6390
-- Never-Seen-Before Secret DNA Code And An 'Unusual Meaning'-Scientists Find, at: http://www.designntrend.com/articles/9627/20131214/never-seen-before-secret-dna-code-unusual-meaning-scientists-find.htm
-- Junk DNA — Not So Useless After All
“Researchers report on a new revelation about the human genome: it’s full of active, functioning DNA, and it's a lot more complex than we ever thought, at: http://healthland.time.com/2012/09/06/junk-dna-not-so-useless-after-all/
-- What
Junk DNA? It’s an Operating System; Their
report adds to growing experimental
support for the idea that all that extra stuff in the human genes, once referred
to as “junk DNA,” is more than functionless, space-filling material that happens
to make up nearly 98% of the genome. http://www.genengnews.com/insight-and-intelligenceand153/what-junk-dna-it-s-an-operating-system/77899872/
Given that their claims don’t even mention those DNA’s gives an
indication that they don’t. So what
does an individual who buys such “kits” really end of knowing about their
genome -- and how can any medical or
eugenic decisions be based on such “information”? Indeed, how can any supposed “ideal child” be genetically
designed at all? Is so-called
“positive eugenics” a bunch of nonsense?
Perhaps the above, too, is a “discussion that deserves to be out in the
public”! In fact, much of what
passes as "genetics research" and the "kits" described below would seem to
border on scientific fraud -- and someone should be held legally
accountable. The article first appeared here.
Caveat emptor! --
DNI]