Dinosaurs are Extinct, but Normalization is Alive and Well
Posted by Emily Beitiks, Biopolitical Times guest contributor on March 22nd, 2016
|My son hugs a stuffed dino. (Kachine Blackwell, used with permission.)|
This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.
Lately, I’ve been learning a lot about dinosaurs. Or, I should say, my three-year-old son has been learning a lot about dinosaurs, and I have been caught in the crossfire. My mind is often churning to relate any new information I take in to my own passion of disability studies. I didn’t expect to find a link to dinosaurs… but I did.
Dinosaur science has advanced remarkably since my childhood. (Did you know, for example, that scientists now believe many dinosaurs had feathers?!)
But while our notions of what dinosaurs could have been is constantly evolving, we still cling to certain tenets of what I like to call “dinosaur normalization.” (I haven’t lexis-nexis’d it, but I think you just witnessed the birth of a completely original school of academic thought!)
Dinosaur normalization is the idea of prescribing what dinosaurs would have been like based on our own narrow worldview.
For a quick example of dinosaur normalization, when scientists first discovered the Iguanodon (see right), they assumed he had a rhino-like horn on his nose. After further skeleton discoveries, it turns out the Iguanodon actually has two horn-like thumbs, something we’ve never seen before.
But you don’t have to be an obscure dinosaur like the Iguanadon (that only three-year-olds and their parents are likely aware of) to be a victim of dinosaur normalization.
Here’s a children’s song about the stegosaurus:
My name is stegosaurus,
I’m a funny looking dinosaur….
My front two legs are very short.
My back two legs are long.
My body’s big, my head is very small
I’m put together wrong!
You know… a little judgmental. Plus, if the stegosaurus is “put together wrong,” isn’t that kinda our bad since we literally put them back together?
But even the almighty T-Rex is not spared from the hammer of normalization. There’s a general fascination with the T-rex’s tiny arms, each with two small claws. Many books ask: why did such a ferocious beast have such puny, useless arms? One fictional children’s film that I watched recently spent a solid 30 seconds joking at the t-rex’s expense.
When the newest movie in the Jurassic Park franchise was released, I was itching to see it for it promised a genetically modified dinosaur. I don’t condone genetic modification, but I thought this premise was brilliant, as it would allow the filmmakers to take all the scariest parts of dinosaurs and jam them together (which, inevitably, makes a really strong argument against genetic modification). Much to my surprise (and many other disappointed fans), the resulting dinosaur mostly just looked like a t-rex with longer arms and a full hand of claws. Sure, it had a few other hidden tricks but if you freeze-frame the film, that’s it. It’s as if there were a bunch of dino-fans who were sitting around saying, “I’m not afraid of the t-rex because its got those tiny arms. But if you had a t-rex with proportionate arms, well, now that’d be scary!”
There’s so much we are still learning about the t-rex. Scientists are now hypothesizing that the tyrannosaurus rex might not have made the ferocious roar we think of from the movies, but something more like a loud bullfrog croak. There’s also a lot of uncertainty about how fast the t-rex runs. Just yesterday even, an article announced the discovery of a pregnant t-rex, which is providing new data on egg-laying. So why aren’t we culturally more open to exploring what purpose the t-rex’s tiny arms might have served? The paleontologists are, but the children’s books and films don’t seem to be.
The disability rights movement pushes us to rethink our assumptions about how the body is supposed to look and what the body is capable of. Many disabled performance artists celebrate how their bodies are “put together wrong” to show us what the anomalous body can do once you embrace creativity and challenge bodily assumptions (see, for example, the many examples in Sins Invalid’s film An Unashamed Claim to Beauty). While the disability movement is pushing us away from normal, our dinosaur education for our kids lags behind.
Everything about dinosaurs is so totally not normal. When I stop and think about dinosaurs, the t-rex’s tiny arms and the stegosaurus’s small head seem so completely uninteresting compared to how bizarre it is that there were dinosaurs like this once living in North America:
Or knowing that this dinosaur-relative once swam in our oceans…yikes!
That our normalizing tendencies have extended to a species from over 65 million years ago shows us just how far our counter-efforts to take down normalcy must also go.
I’m going to encourage my kid not to think twice about the t-rex’s small arms. That’s just how they look, and from what we know about the t-rex (his FAVORITE dinosaur), they were pretty bad-ass, small arms or not.
*Believe it or not, this is actually the second blog by someone at the Longmore Institute with a connection to dinosaurs. Read the other, about Pixar’s access features in The Good Dinosaur, here.
Emily Beitiks is Associate Director of Paul K. Longmore Institute on Disability at San Francisco State University, and a former staffer at CGS. Beitiks earned her Ph.D in American Studies from the University of Minnesota with the dissertation "Building the Normal Body: Disability and the Techno-Makeover".
Images via Wikimedia, Creative Commons.
Whose Body, Whose Property, What Choice?
Posted by Alison Irvine & Katayoun Chamany, Biopolitical Times guest contributors on March 21st, 2016
|Katayoun Chamany, left & Alison Irvine, right
"I've done this because of my poverty. Otherwise I would never have taken this step."
The words of Aasia Khan, an Indian woman acting as a surrogate for an American couple in the documentary Made in India, echoed through the sound system at The New School’s panel entitled “Whose Body, What Choice: Egg Provision, Gestational Surrogacy, and Extending Parenthood”. In addition to viewing clips from Vaishali Sinha and Rebecca Haimowitz’s award-winning documentary, panelists spanning health psychology, queer studies, law, media studies, and life science came together to discuss how emerging reproductive technologies support new forms of family making, invoke bodies in labor and care, and provide bioresources for a burgeoning stem cell industry.
Psychologist Lisa Rubin, queer studies scholar Laura Mamo, and filmmaker Vaishali Sinha described the ways that Assisted Reproductive Technology (ART) has become a common practice in Western countries, yet increasingly more dependent on bodies abroad. As more individuals view ART as a “natural” part of their personal reproductive journey, many assume that the techniques involved in ovarian hyperstimulation, in vitro fertilization (IVF), and surrogacy are FDA-approved and safe. But few are aware of the necessary labor involved and the potential inequities that can arise with increased use of ART.
As a result of shifting legislation, there is both limited access to and varied payment for bodies, cells, and tissues used in the reproductive and stem cell contexts, with little regard to the labor and potential health outcomes of all involved. As one attendee commented, she was unaware of the details involved in the egg retrieval surgical procedure which requires puncturing hyperstimulated ovaries—a separate puncture for each egg removed. Additionally, the ripple effects of the stress of living with economic constraints can influence the health of the egg provider or surrogate, and the health of the potential child through DNA reprogramming events.
Using visual narratives from the newly launched Stem Cells Across the Curriculum project, biologist Katayoun Chamany, showcased how ART can involve multiple bodies, including those of the egg provider, the potential surrogate, the embryo, and the future child. Some children are conceived though a combination of IVF and Preimplantation Genetic Diagnosis (PGD), a genetic screening technique that can exclude embryos with gene variants associated with disease risk, but improve the probability of an immunological match to a sibling living with disease. Stem cells can be obtained from the cord blood, peripheral blood, or bone marrow of the “savior sibling” to support the treatment of the sibling living with disease. The labor involved in hormone stimulation of the mother’s ovaries and the retrieval of stem cells from the sibling, create new forms of kinship and responsibility in families that have the means to engage in such practices.
During her presentation, law scholar Lisa Ikemoto touched on the issues of labor, property, and informed consent. Participation in surrogacy, tissue and egg donation, and clinical trials is not commonly thought of as “labor” as it is defined in The Labor Theory of Value. When it comes to regulating ART practices, this perception influences how compensation for surrogacy and egg donation is determined. Providing a history of property law and practice, Ikemoto, illustrated how bodies and cells used in the service of ART may be considered property secured through “purchase” or “labor of invention.” In the past, informed consent was designed to give research participants the autonomy to consider the risks and benefits associated with a research study as part of their decision making about whether to agree or refuse to participate. As Ikemoto illustrated using three case studies, it seems that informed consent now serves the purpose of a contract in which the cell or tissue provider gives up all property rights.
As Ikemoto detailed, the landscape in the U.S. is complicated and inconsistent from state to state and case by case. Thus, other countries have emerged as leaders in commercialized gestational surrogacy supporting contract pregnancies and creating a multibillion-dollar-a-year industry. In this context, IVF is used to create embryos that are then transferred to the uterus of the person willing to serve as the gestational surrogate and undergo caesarean section to deliver the child to the intended parents.
In the U.S., acquiring the services of a gestational surrogate can cost upwards of $100,000. Some states, including New Jersey, Michigan, and Washington, ban contract surrogacy, while New York and Washington D.C. currently have pending legislation that would regulate and legalize the practice. The varied patchwork of laws combined with the steep cost has pushed some prospective parents to seek out surrogates from other countries, including India, in a process known as “transnational surrogacy” or “reproductive tourism.” India legalized contract surrogacy in 2002 for heterosexual couples, and costs are listed at under $30,000 with surrogates reportedly being paid anywhere from $800-$8,000 at the discretion of the surrogacy clinic.
During the dialogue moderated by Lisa Rubin, the panelists discussed the consequences of a new law enacted this year put forth by the Indian Council of Medical Research (ICMR), a government-appointed body. The law bans surrogacy services to foreigners and is driven by a desire to “safeguard the rights of the surrogate mothers.” A similar ban is already in place in Thailand. However, as Sinha pointed out, there has been concern that these bans will push surrogacy to the black market, increasing the danger to surrogates. Instead of outlawing transnational surrogacy, many women’s rights advocates in India have come out in support of more regulation of the surrogacy industry, as depicted in Amrita Pande’s ethnographic work Wombs in Labor: Transnational Surrogacy (mentioned in Ikemoto’s presentation). Many of these advocates believe the process of putting regulatory measures into place encourages discourse around the subject, and keeps surrogacy out in the open and off the black market.
Laura Mamo extended the conversation regarding rights, protections, and benefits by asking “From what towns, communities, and countries will the bio-materials be drawn...to fulfill the American Dream?” The conversation then turned to who is most likely to benefit, as it is clear that most of the economic gain benefits some stakeholders, such as surrogacy clinics and medical professionals, and not others, such as the surrogates. This disparity calls into question society’s ability to put the emotional, mental, and physical well being of surrogates in front of a profitable industry and the desire to create genetically related families. Shamina Shafiq, head of the nonprofit Progressive Organization for Women’s Empowerment and Rehabilitation, states that the main beneficiary of surrogacy should be the surrogates, not the medical fraternity. Even if regulations were put in place to ensure that providers are the main beneficiaries of their labor, would it be enough to shift the balance of power and prevent surrogates and egg providers from being exploited?
In addition to fair payment, appropriate guidelines, and regulation, the panelists also discussed procedural justice issues associated with ARTs. That India and some states in the U.S. restrict access to ARTs to those who are married or in heterosexual couplings exemplifies the ways in which family making is not accessible to all. Not surprisingly, a new market catering to homosexual couples and singletons has emerged, with Mexico serving as one site of such services.
The panelists also raised questions around the recruitment practices for egg “donors” that seek individuals with high SAT scores and other desirable characteristics and juxtaposed this practice to those used for egg provision in stem cell research. In June 2009, New York became the first state to allow taxpayer-funded researchers to compensate those who provide eggs to scientific research, stating that the compensation was socially just. Similar to the varied regulations for surrogacy, compensation rates for egg donors for reproductive purposes fluctuates by state. Thus, the Ethics Committee for the Empire State Stem Cell Board used the caps put forth by the The Ethics Committee of the American Society for Reproductive Medicine (ASRM) at no more than $10,000 per egg retrieval cycle. Though the matching amounts for egg provision across the reproductive and stem cell research sectors can be described as equitable, the payment scales have come under question. Some feel that the pay exploits those with low economic means and further widens the gender equity gap in employment opportunities, and others feel that they should be able to negotiate a fair rate, and have sued the ASRM for price fixing based on the Sherman Act.
Documentaries such as Eggsploitation by Jennifer Lahl, filmmaker and founder of The Center for Bioethics and Culture Network, highlight the potential short-term and long-term health risks and overall lack of knowledge around the process of egg retrieval. The process of retrieving oocytes consists of a series of self-administered daily hormone injections to suppress the donor’s cycle, stimulate the ovaries, and trigger ovulation. Using human chorionic gonadotropin (hCG) injections is associated with many health risks, such as Ovarian Hyperstimulation Syndrome (OHSS), which could result in ovarian torsion, blood clots, fluid accumulation in abdomen and chest, kidney failure, and in rare cases, death.
Given these risks, those lobbying for the 2013 “Bonilla Bill” in California argued that without compensation, they couldn’t retrieve the oocytes that will one day contribute to the research that will benefit women’s health. Ultimately, though the bill was passed by the congressional legislature, it was vetoed by the governor who claimed that "Not everything in life is for sale, nor should it be." However, a new act was proposed in February 2016 by California Assembly Member Autumn Burke for compensation to those providing eggs for medical research on the basis that they are acting as any other human subject participating in research. However, as Chamany pointed out, given that there are no long-term data on the health outcomes of young fertile oocyte providers, bills such as this one proposed in California, and the existing order in New York, should incorporate long-term monitoring of the health of these oocyte providers if the rationale is based on encouraging research participation in clinical trials
More recently, advances in egg freezing may shift these health and economic concerns from third-party egg providers to those seeking pregnancy later in life. As Ikemoto highlighted in her presentation, earlier this year the United States military agreed to cover the costs of sperm and egg freezing for their personnel, following the trend set by Apple and Facebook in 2014. This type of policy highlights how social policy frames family making as an essential human activity, such that if an opportunity is available, one should take advantage by any means. The discussion on this panel cast a critical eye on such generalized views and presses us as we move forward to consider the trade offs of any such policy in terms of who benefits and who carries the burden or risk.
Alison Irvine is Community Manager at Genspace and a performance artist & writer based New York City. @alisonirvine1
Katayoun Chamany is Associate Professor of Biology at Eugene Lang College for Liberal Arts at The New School. @KatayounChams
Previously on Biopolitical Times:
Composite image via Twitter
Correction: The first iteration of this blog post paraphrased Aasia Khan's quote from Made in India as "I would not have done this if it weren't for the money."
Posted in Assisted Reproduction
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Egg Retrieval
, Human Rights
, Media Coverage
, Other Countries
, Reproductive Justice, Health & Rights
, Stem Cell Research
, The States
, US Federal
| Add a comment
Uterus Transplants: Identifying Stakeholders & Objections
Posted by Elliot Hosman on March 10th, 2016
On February 25, the Cleveland Clinic announced that the first “womb” transplant had been successfully completed in the US, using a uterus from a deceased donor. The 26-year old recipient, identified as Lindsey, joined a press conference on March 7 in a wheelchair and expressed her gratitude. On March 9, the clinic released a second media statement: Lindsey’s uterus transplant had been removed due to a “sudden complication.” As NPR noted, the clinical trial will continue—nine women with uterine factor infertility still await the procedure in Cleveland. Their motivation to continue with the grueling, risk-laden procedure may be similar to Lindsey’s:
“I crave that experience,” she said. “I want the morning sickness, the backaches, the feet swelling. I want to feel the baby move. That is something I’ve wanted for as long as I can remember.”
The future of reproduction has never appeared so technologically complex. Amid ongoing policy debates about gene-editing embryos, and the potential spread of “3-person IVF” from the UK to the US, we’ve also seen a rapid increase of clinical trials for a revolutionary surgical procedure: womb transplants—i.e. temporary uterus transplantation into “genetic females” born without uteruses (but with working ovaries) for the purpose of enabling pregnancy for one or two genetically related IVF offspring.
An early effort at uterus transplantation was conducted in Germany in 1931 on Lili Elbe, who is historically identified as both transgender and intersex, and who died shortly thereafter. (Her story is told in The Danish Girl.) Unsuccessful attempts were also made in Saudi Arabia in 2000, and in Turkey in 2011.
Headlines since 2014 exhibit building momentum and clinical uptake:
Uterus Transplants Enter U.S.
Setbacks for clinical patients like Lindsey are to be expected, as successes have been few and recent. The procedure’s clinical viability (and eligibility guidelines) began in Sweden—where nine transplants, seven that were ultimately successful, have taken place resulting in five babies since 2014.
For more than a decade, a research team led by Dr. Mats Brännström, professor of gynecology and obstetrics at the University of Gothenburg, conducted surgeries on animals ranging from rodents to non-human primates (including some 80 baboons) to establish a threshold of perceived safety for the transplantation of donor uteruses into humans. According to a New York Times report, Dr. Andreas G. Tzakis, director of solid organ transplant surgery at the Cleveland Clinic, spent a lot of time with this Swedish team, “practicing in miniature swine and baboons and observing all nine of the human transplants in the operating room.”
Notably, the Swedish researchers are the only ones to have established and documented their protocol working in animal models. They have shaped not only the technical specifics of the procedure, but also protocols and assumptions about who is considered an acceptable clinical subject. So far the majority of people targeted for the procedure have been diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome in which infants are born with an intersex phenotype, including underdeveloped or absent uteruses and vaginas. It’s also important to note that all gestational surrogacy is banned in Sweden, both commercial and “altruistic”—so people set on having genetically related children may be more willing to turn to risky surgeries instead.
Media have quoted the Swedish team expressing the underlying values and assumptions that drove their research, including:
“Dr Brännström said that the nine women who had received womb transplants had already been deeply affected by the experience. ‘Some of them say that it’s fantastic just to have a period. They say: ‘Now I feel like a real woman, a normal woman, for the first time.’” (2014)
“‘We are not going to call it a complete success until this results in children. That's the best proof.’” (Michael Olausson, 2012)
In light of the birth of a handful of premature babies via uterine transplant and ongoing safety and ethical concerns, Brännström is focusing on improvements including efforts to grow a womb in the lab, a “bioengineered uterus.” He describes this process as “taking one from a deceased donor, stripping it of its DNA and using cells from the recipient to line the structure.” According to news reports, he has “started preliminary tests in animals and estimated it would be another five years before the technique can be tried on humans.” This may impact a key concern with the transplant: maternal and fetal exposure to powerful immunosuppressants.
Bioethics and Biopolitics: Making Policy in the Lab?
As these clinical trials migrate from Sweden to clinics around the world, ethical concerns have been mounting. A lonely set of formal ethical guidelines, “The Montreal Criteria,” was published in 2012, and slightly revised in 2013. There was immediate pushback to the criteria; one concern: the guidelines are narrowly applicable, myopically reflecting the context of wealthy countries with well-developed biomedical sectors. In the 1970s, only 1 out of 10 women in the United States made it to menopause without giving birth to a child. Fast-forward to 2010 and that number had doubled according to Pew Research Center, roughly 1 in 5, or 20% of women end their “child-bearing years” child-free. (More recently, Pew found childlessness is actually decreasing among highly educated women.) Which is to say that even in these modern times of single ladies, egg freezing parties, and the increasing legal acceptance of LGBT relationships—and interdependent upon factors such as income, ethnicity, and education—some 80% of women will become pregnant and give birth in their lifetime.
With this in mind it’s important to start asking a wide range of questions about the assumptions and values that underlie current excitement about the potential of uterus transplants:
- Is uterus transplantation a medical procedure? A cosmetic surgery? Neither?
- Why are clinical subjects only allowed to participate in a trial if they have working ovaries, given that fallopian tubes are never connected to the transplant itself?
- Why is genetic relationship so important if the main draw is to experience a pregnancy?
- Why should the procedure be limited solely to “genetic females” when the majority of clinical subjects are on the intersex spectrum of sexual difference? Should men and transgender women have access given the congruent technological advances of gender-affirming surgeries?
- What influence and relevance does the long-standing and recent history of medically unnecessary and coercive surgeries on intersex children and adults have in this context?
- How do we ensure long-term clinical follow up for women and children who participate in this brave new world of gestational place-making?
- What are the health impacts for all parties involved that would caution against using either living or deceased donors?
What else would you add to a growing list of ethical, social, or political objections?
Mats Brännström et al., Livebirth After Uterus Transplantation, THE LANCET 1, 8 (2014) [Sweden], available at http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2814%2961728-1/abstract.
Ariel Lefkowitz et al., The Montreal Criteria for the Ethical
Feasibility of Uterine Transplantation, 25 TRANSPLANT INT’L 439-47, at
444 (2012), available at http://onlinelibrary.wiley.com/doi/10.1111/j.1432-2277.2012.01438.x/pdf.
Ariel Lefkowitz et al., Ethical Considerations in the Era of the
Uterine Transplant: An Update of the Montreal Criteria for the Ethical
Feasibility of Uterine Transplantation, 100.4 TRANSPLANT INT’L 924-26
(2013), vailable at http://www.fertstert.org/article/S0015-0282%2813%2900636-5/abstract.
Wafa Mohammed Khalil Fageeh, et al., Transplantation of the Human
Uterus, 76 INT. J. GYNECOLOGY AND OBSTETRICS 245–51 (2002) [Saudi
Arabia], available at http://www.ncbi.nlm.nih.gov/pubmed/11880127.
Zubia Mumtaz & Adrienne Levay, Ethics Criteria for Uterine
Transplants: Relevance for Low Income, Pronatalistic Societies?,
J.CLINICAL RESEARCH AND BIOETHICS S1:004 (2012), available at http://www.omicsonline.org/ethics-criteria-for-uterine-transplants-relevance-for-low-income%20pronatalistic-societies-2155-9627.S1-004.php?aid=11138.
Omer Ozkan, et al., Preliminary Results of the First Human Uterus
Transplantation from a Multiorgan Donor, 99 FERTILITY AND STERILITY
2:470-476 (2013) [Turkey], available at http://www.ncbi.nlm.nih.gov/pubmed/23084266.
Previously on Biopolitical Times:
Images via Flickr/Tom Simpson; Wikimedia: Mats Brännström; and Pixabay
Posted in Animal Technologies
, Assisted Reproduction
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Egg Retrieval
, Elliot Hosman's Blog Posts
, Media Coverage
, Other Countries
, The United Kingdom
, US Federal
| 3 comments
CRISPR Eugenics in The X Files
Posted by Elliot Hosman on March 10th, 2016
CRISPR-Cas9 “gene editing” has been a source of hype, hope, and caution for the past several years, and its presence in labs, patent fights, policy discussions, and headlines has grown exponentially.
But in the finale of The X Files’ comeback season, it is aliens who first harness genome editing. “CRISPR patent belongs to aliens,” Sara Reardon comically claims in the Nature books and arts blog A View From the Bridge. As she notes,
it is human genome editing that forms the season’s backbone: a concept that is far more scientifically plausible today than it was in 2001 [around when The X Files went off-air] — or even 2012 [when CRISPR-Cas9 was developed as a genome editing platform].
In The X Files, the aliens use gene editing in the service of population control campaigns on other planets. In the real world, the range of potential CRISPR applications triggering social and ethical controversy includes
- human “germline” gene editing, i.e. creating modifications that will be passed down to future generations by engineering germ cells (gametes or embryos) prior to initiating a pregnancy — what the media sometimes call “designer babies” and
- climate change gene editing, i.e. attempting to alleviate the effects of anthropogenic global warming by modifying plants and animals, including drought-tolerant corn and soybeans and heat-tolerant cows.
Both of these brave-new-world applications come into play in the finale’s dystopian plot.
The Science of The X Files
The science in The X Files finale is discussed rather breathlessly, so for those who might have missed it:
In an earlier era of Roswell crash-landings and secretive extraterrestrial research, scientists discover that aliens had developed a “Spartan Virus” to “manage” overpopulation. At some point in the last century, motivated parties on earth co-opt this viral population-control method by creating a germline gene therapy to slip into mandatory smallpox vaccinations.
In real life, routine smallpox vaccination ended in the United States in 1972; in The X Files finale, regardless, the Spartan Virus continued to infiltrate the population for decades because everyone who was vaccinated passed on the CRISPR complex to future generations. Fast-forward to 2016, and a prominent villain from earlier seasons has decided it’s time to activate the Spartan Virus in order to CRISPR-edit out a gene to turn off people’s immune systems. (The reference is to the adenosine deaminase (ADA) gene, which is associated with “bubble boy syndrome.”)
How does the villain activate this CRISPR mechanism? With chem trails of aluminum nanoparticles! The only way to survive? An elite cabal has exclusive access to a secret germline technique using alien DNA (literally) that disables CRISPR from editing out the ADA gene, thereby preserving immunity.
Some of the described or implied science here is pretty far-fetched, but some not so much. The time-delay germline engineering described in The X Files finale, for example, bears at least some similarity to the CRISPR complex recently reported [PDF] by the Stanley Qi Lab at Stanford University. In that study, a “dead Cas9” protein is used to regulate gene expression through activation or interference. This seems to suggest that it may be possible to design platforms like these, capable of being designed to hang out in the genome until sometime later (in The X Files’ case, decades), when they could be activated and begin to carry out programmed edits or regulatory activity.
The science of how CRISPR is delivered into living children and adults to affect their germ cells is not made clear in the finale. This is an important point to clarify regarding the state of the science, as many in the ongoing policy debate, including the Center for Genetics and Society, draw a clear line between gene therapy that would affect the body of just one patient (somatic), and interventions into gametes or early embryos (germline).
Familiar Political Themes
What about the politics embedded in The X Files finale?
Since the days of Thomas Malthus, alarms about overpopulation have often been accompanied by xenophobia, elitist attempts to control reproduction, and racialized crackdowns on borders and migration. In The X Files finale, the plot situates itself among the fears of anti-vaxxers and conspiracy theorists, but concerns over anthropogenic climate take center stage. The villain’s purported goal in undermining human immunity is to “to kill everyone but the chosen.” He cites “40-percent loss of bird life, the decimation of the ‘megafauna.’” He applauds the aliens for divining this efficient method of population control for their own planets, an eerie tribute to the American eugenicists who embraced forced sterilization for ”defectives” and better breeding among the “chosen.”
In the finale, CRISPR is controlled and distributed by those in power: the villain holds captive the antidote to immunity breakdown, and doles it out (in exchange for “favors”) to those he deems worthy to survive. In our twenty-first century reality of global inequality, both human and nonhuman applications of CRISPR involve a lot of private investment and patentable content. Will nonfictional biotechnological advantage become the province of the wealthy? Will it exacerbate existing disparities in living and health conditions between the wealthy few and the majority of humanity living in poverty?
In The X Files, CRISPR was portrayed as a magical techno-fix to global climate change and overpopulation; in real life, some are similarly hyping it for disease prevention. The New York Times recently discussed the vast biotech menagerie of Randall “RJ” Kirk, whose Intrexon empire includes the gene-edited-pests company Oxitec, which is currently releasing 250,000 GM mosquitoes per day in Brazil in attempts to combat the spread of a virus linked to birth defects. And the FDA is “greatly expediting” Oxitec’s application to begin testing out their GM mosquitoes in the Florida Keys. What makes Kirk eyebrow-raising, among various eccentricities cited in the article, is his portfolio of controversial, financially struggling, but nonetheless bio-revolutionary firms, and his willingness to take unilateral leaps forward into the biotech unknown. Whether chasing techno-enthusiastic solutionism or the risk-laden profit margins of spread-thin solvency, Kirk symbolizes many of the concerns raised by the undemocratic development of biotechnology.
Science, Storytelling, and Public Debate about Emerging Technologies
The X Files director Chris Carter recently called on long-time science consultant and University of Maryland virologist Anne Simon to brainstorm a technology that could help tie together the series’ ongoing plot lines. A number of reporters have asked Simon whether she feels that the plot’s reliance on CRISPR could escalate public fears about the (real-world) game-changing technology. Some of Simon’s responses have been dismissive:
[I]f you think that people are going to avoid vaccinating their kids because of imaginary aliens doing things on a TV show, that is just ridiculous. There isn't any hope to begin with for anyone that dumb.
Others seem overly optimistic:
Simon wants it made clear that in the real world, CRISPR and other genetic engineering techniques are tools for good, not evil. ‘The X-Files’ may be spooky, but it’s just a TV show. “The whole idea of trying to get something into everyone’s cells – that’s not a viable system,” she told GeekWire. “We keep trying to say these are aliens doing this. … It’s aliens, OK? Aliens can do anything.”
And sometimes she waxes thoughtful:
Simon doubts that the episode will fuel fears of CRISPR. “It’s just a tool,” she says. In fact, when director Chris Carter asked her to create a world-destroying technology, she took care to avoid stoking real fears. GMOs and common vaccines were right out. She settled on the smallpox vaccine because it hasn’t been routinely given since 1972. And relegating vaccination conspiracies to the same level as aliens and chemtrails might even be helpful.
Simon does hope that the entrance of CRISPR into popular culture will stimulate discussion of its many applications and ethical ramifications, primarily those involving editing humans. “I think we have to be careful about modifying the human germline because we don’t know what we’re doing,” she says. The public, not just those who wield the technology, should be crucial players in making such decisions.
As Simon indicates, CRISPR’s potential use on the human germline – the third rail of genetic technologies – threatens to escalate public distrust in science. A concluding statement issued by the organizing committee of the three-day international summit on human gene editing in D.C. last December stated that it would be “irresponsible to proceed” with germline gene editing in the absence of “broad societal consensus.”
In 1998, the National Academies founded The Science & Entertainment Exchange, which has consulted over a thousand times on films and television shows. As this project indicates and as many observers recognize, popular narratives that engage with emerging bio-engineering technologies can shape public sentiment and facilitate broad debate about the multi-generational and societal impacts of research and experimentation.
The X Files is the first television show to feature CRISPR gene editing, the alternate futures it enables, and the social and political questions it raises. Let’s hope the writers now working on 12 new episodes of the British hit show Black Mirror are taking note.
Previously on Biopolitical Times:
Images via Wikimedia: Roswell, Smallpox, Malthus, Rabbits
Posted in A "Post-Human" Future?
, Animal Technologies
, Arts & Culture
, Biopolitics, Parties & Pundits
, Biotech & Pharma
, Elliot Hosman's Blog Posts
, Inheritable Genetic Modification
, Media Coverage
, Patents & Other IP
, Synthetic Biology
| Add a comment