The Perfect 46: A “Science Factual” Film about our Near Future
Posted by Jessica Cussins on July 10th, 2014
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.
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,
By making the film as factually accurate as possible, the conversation that the film creates should, I think, spark something that a more futuristic, fantastic treatment perhaps cannot. The topics we cover in the film – genetics, eugenics, the moral and ethical implications of a consumer genetics service, and the role of government vs. a DTC model – are discussions that deserve to be out in the public. This is a film of the moment.
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?
Previously on Biopolitical Times:
Posted in Arts & Culture
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Civil Society
, Genetic Selection
, Jessica Cussins's Blog Posts
, Media Coverage
, Personal genomics
, Reproductive Justice, Health & Rights
, Sequencing & Genomics
| Add a comment
Cross-Border Surrogacy: Media Spotlight, EU Court Decision, International Forum
Posted by Marcy Darnovsky on July 10th, 2014
As The New York Times pointed out in a front-page article this past Sunday, “hiring a woman to carry a child” is not allowed in “most of the world.” But cross-border surrogacy, which took off in India more than a decade ago, continues to spread and grow. Now, a range of challenges connected to the practice is being addressed by a high-profile media account, a ruling of the European Court of Human Rights, and an upcoming international conference.
The U.S. as a destination for contract pregnancy
The New York Times story’s focus is on people from outside the U.S. who arrange a contract pregnancy here because it is illegal in their home countries. The featured commissioning parents in “Coming to U.S. for Baby, and Womb to Carry It” by Tamar Lewin are a gay Portuguese couple. Their story – and the baby they are now happily raising – frames the lengthy piece, but Lewin also details the obstacles and tribulations they faced, including a close brush with a sketchy surrogacy agency, a miscarriage, costs in the hundreds of thousands of dollars, and challenges getting citizenship in Portugal for their son.
Lewin also includes critical comments from two feminist scholars, McGill University emeritus professor Abby Lippman and Ingrid Schneider of the University of Hamburg’s Research Center on Biotechnology, Society and the Environment. And she tells the story of Arizona surrogate Heather Rice, who came into conflict with the couple that hired her when, 21 weeks into her pregnancy, an ultrasound showed a problem with the fetus she was carrying.
The article attracted more than 500 comments; an analysis by CGS summer intern Victoria Nichols (available by request) found those expressing opposition or concern about commercial cross-border surrogacy outnumbering those expressing support for it by about 4 to 1.
(As a side note on media coverage, the shortened version of the article that appeared in the San Francisco Chronicle on July 9 omitted nearly all the material that would raise concerns about cross-border surrogacy – including the problems encountered by the Portuguese couple; the comments by Lippman and Schneider; Rice’s story; the cases of US surrogacy agencies, which are entirely unregulated, that have ripped off both intending parents and surrogates; and more.)
European Court of Human Rights rules on children of surrogacy
The legal status of children born as a result of cross-border surrogacy arrangements – that is, their officially recognized parentage and citizenship – has become an increasingly pressing issue. Difficult situations can arise when commissioning parents from countries that prohibit commercial surrogacy flout these laws by hiring surrogates in one of the few jurisdictions that allow it.
Most of the time, the parent’s countries have permitted these children to return home with their social parents. But sometimes they live in legal limbo for years. In late June, the European Court of Human Rights (ECHR) ruled on cases brought by two French families whose children were conceived with their fathers’ sperm and third-party eggs, and carried and delivered by surrogates in California and in Minnesota. The children have U.S. citizenship because of their birth place, and their parentage had been legally established in the United States. They have been living with their families in France, but without legal recognition of their parental status.
The ECHR did not question France’s right to prohibit commercial surrogacy, but ruled that refusing to grant legal status to the parent-child relationships of children born to surrogate mothers abroad “undermined the children’s identity within French society.”
An international conference on cross-border surrogacy
These questions and many others will be considered at the upcoming International Forum on Intercountry Adoption & Global Surrogacy, to be held this August in The Hague, Netherlands. The forum will bring together women’s health advocates, scholars, and policy and legal experts from around the world; its objective is
to produce a body of knowledge that will inform the work of the Hague
Convention as it moves ahead with implementation of the Hague Convention
on Inter-Country Adoption, and with plans to create a convention on
The Center for Genetics and Society is chairing the forum’s thematic area on “Global Surrogacy Practices.” We’ll be reporting in this blog on the forum’s deliberations and recommendations.
Previously on Biopolitical Times:
A Paragraph in Slow Motion: Three-Person IVF in The New York Times
Posted by George Estreich, Biopolitical Times guest contributor on July 10th, 2014
|A microscopic image that shows a genome being removed from a donor egg. 1. Manipulation pipette. 2. Donor egg. 3. Holding pipette. 4. Zona pellucida (encircling the egg). 5. Location of the oocyte genome (or nuclear DNA) before removal. Photograph from the New York Stem Cell Foundation.|
On June 27, the New York Times Magazine’s cover story was “The Brave New World of Three-Parent IVF” by Kim Tingley, a feature article on the new technique it calls “mitochondrial replacement therapy.”1 That technique would combine the nuclear DNA of two people with the mitochondrial DNA of a third, creating an embryo with three immediate genetic parents, in an attempt to avoid one kind of inherited mitochondrial disease. Human trials are currently proposed.
Because this procedure would cross the line into inheritable genetic modification—a bright line that forty-four countries have agreed, as a matter of policy, not to cross—I was curious to see how the Times would report on the procedure. Human biotechnologies are rocketing ahead under the radar; for many readers, the article will be an influential introduction to the issues. Since the article was presented as a feature, and not an opinion piece, the writer had an obligation to present the issues in a balanced way.
Unfortunately, Tingley’s reporting is strongly tilted in favor of the procedure: for her, it’s clear that fears of a brave new world are overblown, and potential benefits underrated.
Structurally, this bias is evident throughout. The article is anchored by a profile of the likable and apparently idealistic scientist Dieter Egli, an advocate of the procedure; we see him reflecting humanely, practicing science competently, listening carefully to opponents. In a truly balanced article, someone who disagreed with Egli would also be profiled, but no one opposing the technique is given remotely equal narrative weight.
Also profiled are families who benefited from cytoplasmic transfer, a precursor to the technique; the families are shown in color photographs, their heartfelt gratitude is recorded, and the health (and intelligence) of their children is emphasized. No such treatment is given to those who question the procedure. Their views are often represented by fearful anonymous comments; when people are quoted on the record, they are represented in brief snippets. Often, their objections are subsequently answered, giving those in favor of the procedure the last word. Significantly, strong arguments against the procedure are omitted.
Tingley’s rhetoric is broadly familiar from writing that advocates the adoption of new technologies. Therefore, “The Brave New World of Three-Person IVF” offers a case study of the way pro-technology assumptions have been absorbed into mainstream media. To show the pervasiveness of these ideas, I’ll dissect a single, pivotal paragraph, examining it point by point: in slow motion, as it were.
What often gets lost in the loaded language of the debate over three-parent babies is the fact that ordinary human reproduction is, by definition, genetic modification. The risks involved are unpredictable and potentially tragic; the subject of the experiment is a future person who cannot consent. We constantly try to control this process, to “design” our children, starting with our choice of sexual partner. During pregnancy, we try to “enhance” them by taking folic acid, not smoking, avoiding stress; once they’re born, we continue the process with vaccines and nutritious food, education, clean air and drinking water. Some of these pre- and postnatal environmental factors, we now know, change their biology in heritable ways. Is mitochondrial replacement, because it takes place in a petri dish, any more unnatural or morally repugnant than this? Would the answer change if the technique turns out to cure age-related infertility in addition to preventing disease?
Now, in slow motion:
What often gets lost in the loaded language of the debate over three-parent babies…
The paragraph’s opening move is familiar: to decry the quality of debate (“loaded language”), and to position the writer as rational. By implication, Tingley will offer language that is non-loaded and clear.
…is the fact that ordinary human reproduction is, by definition, genetic modification.
Words that conjure the rational—fact, definition—are opposed to “loaded language.” But to say “reproduction” is identical to “genetic modification” is neither factual nor definitive. It is an analogy: an argumentative chimera, engineered by the writer.
(1) The technique has many names: three-parent IVF, three-person IVF, mitochondrial transfer, maternal spindle transfer. The differences are not insignificant. Strictly speaking, it is the nucleus, not the mitochondria, which is transferred. I use the phrase “three-person IVF,” which avoids the multiple meaning of “parents.”
Shameful Conflicts of Interest Involving California's Stem Cell Agency
Posted by Pete Shanks on July 9th, 2014
Alan Trounson, until very recently president of the California Institute for Regenerative Medicine (CIRM), has accepted a position on the board of StemCells, Inc., a company that has had $19,399,504 in grants from CIRM. If the clinical trials that CIRM is partly funding pay off, he could make a bundle on stock options (details of his compensation are not available). David Jensen, of the California Stem Cell Report, brought this to light, and much more.
That looks bad, but there is much more. Jensen's dogged reporting over the last two years established that the $19m "forgivable loan" was only approved after controversial lobbying by former CIRM chair Robert Klein that resulted in the main board overruling the recommendation of their scientific advisers.
Financially, the $19m is the least of it. Irving Weissmann, the cofounder (and still an active board member) of StemCells, Inc., has had four grants from CIRM totaling $35,420,939.
Weissman was an active pitchman for Proposition 71, which set up CIRM, appearing in TV ads that mentioned his work at Stanford (he directs the Institute of Stem Cell Biology and Regenerative Medicine) but not his entrepreneurial efforts.
But $55m is far from the end of the money involved. Stanford University has had more awards for more money than any other institution: 80 grants totaling $280,768,314. UCLA is second, at $215m, and no other institution has received close to that amount.
One anonymous researcher emailed Jensen:
Are they really more than twice as good as UCSF ($132,650,363), and three times better than USC ($104,858,348) and UC Irvine ($98,591,836)?
Let's be blunt: This looks like a pay-off. Technically, what Trounson and Weissman and StemCells, Inc., just did may not be illegal. But it's shameless.
Trounson is well aware of conflicts of interest, which have swirled around CIRM before. Indeed, he has in the past recused himself from discussions of grant applications from StemCells, Inc., and Jensen has documented other scandals. All of which were thoroughly predictable. They were baked into the structure of the agency. The potential for conflicts of interest was one of the main critiques of Proposition 71, as shown in this September 2004 Nature report:
Critics slate ethical leeway in California stem-cell proposal
Which quoted one of the proposition's authors saying that any such charges were baseless:
"We want to avoid even the appearance of a conflict," says Weissman.
Yup, same guy. Just a month later he was refusing to comment on reports that his stock options in — yup — StemCells, Inc. could benefit from passage of the proposition. Richard Hayes, then Executive Director of CGS, put the problem tactfully to Science:
We're concerned that Prop 71 gives interested parties enormous power over a huge sum of public funds and restricts public accountability.
We were right. (The full 2004 CGS analysis is here.)
Trounson, who made $490,008 a year as President of CIRM, quit his job to return to Australia and spend more time with his family; the StemCells, Inc., press release confirms that he is returning to Melbourne. Nevertheless, his "unique combination of leadership experiences make him a very valuable addition to our board at this transformational time for our Company." Doing what?
Of course, Trounson was also aware that CIRM has been approaching a critical turning point, as articles in both Nature and the San Francisco Chronicle (which featured StemCells, Inc.) pointed out last week. This kind of revolving-door appointment can only hurt the agency, not to mention Trounson's personal reputation.
The Chronicle ran another story when this news broke, confirming that Trounson will receive cash and stock. It also quoted John Simpson, of Consumer Watchdog, who wrote in an email:
"A reasonable 'cooling-off period' — say two years — would have been appropriate before Trounson joined the board of a private company enjoying CIRM's largess. I can only hope Trounson sees his error and steps down from StemCells Inc.'s board."
CIRM should take a long look at its practices and procedures, which have never served the agency well — and especially should consider its obligations to the public, who fund it. There can be practical difficulties in balancing expertise and objectivity; the best scientists in any field do tend to know each other well. All the more reason to be especially careful. This kind of obviously problematic conflict of interest can and should easily be avoided.
Previously on Biopolitical Times: