Breaking the Law? Assisted Reproduction and Tacit Normativity

Daniela Schuh | 17 June 2015
Nation-specific imaginaries of what it means to be a citizen are attached to practices of technologically assisted reproduction.

The US and France invoked different normative standards to admit biologically novel newborns to American and French citizenship, respectively.

The problem is that the law hasn’t kept up with the advances in reproductive technology,” explained Mrs. Brisman, a New Jersey lawyer, when commenting on Ellie Lavi’s protracted attempts to register her daughters as U.S. citizens (1). When the American-Israeli mother gave birth in Tel Aviv, the U.S. State Department refused to recognize the parent-child relationship because the twins were conceived with egg and sperm from anonymous donors and thus were not biologically related to Mrs. Lavi. Born in Israel and lacking a genetic tie to a U.S. national, the twins were initially rejected for U.S. citizenship. This situation changed only with the reinterpretation of a provision in the Immigration and Nationality Act (INA), which now recognizes both genetic and gestational motherhood as a basis for claiming citizenship for a child.

Meanwhile, France’s Supreme Court dealt with the question whether twin boys borne by a surrogate mother in India for a French couple should be granted citizenship. Although there was a genetic tie between the intended father and the children, French judges decided to reject the couple as legal parents and denied citizenship. Uncertainties regarding the boys’ civil status were ironed out only when the European Court of Human Rights decided that France must recognize the parent-child relationship when citizens conduct gestational surrogacy abroad.

The U.S. lawyer’s statement above captures the prevailing sentiment about the law’s sluggishness in the American context but it also holds true for French public debates on surrogacy. At its heart is a picture of the law as a viscous body of rules that eternally trails behind the inexorable agenda-setting forces of science and technology. This perception of the relationship between law, science and technology is commonplace in public controversies about novel technologies and has been examined critically by STS scholars (2). Yet, the mere coexistence of the American and French stories on foreign surrogate mothering underlines the limitations of this narrative.

While giving birth was not at first sufficient to establish legal parenthood and citizenship under U.S. law, the situation in France was exactly the reverse. French authorities refused to recognize the lineage between the twins and the genetic father, and to accept the boys as citizens, precisely because the legal definition of parentage was keyed to the act of giving birth. These contrasting rules represent an unexpected nexus of two larger complexes of law that came into play in these situations.

On the one hand, there are nation-specific ways of controlling the degree to which the process of human reproduction can be mechanized and externalized with the help of novel technologies (e.g. in-vitro fertilization, gamete donation, surrogacy). On the other, there are regulations that tie bodies to political spaces, including nation-specific ways of obtaining citizenship and the rights and obligations that attach to citizens. The influence these bodies of law can have on people’s decisions to conduct fertility treatments abroad became evident in the case of the French couple that engaged a surrogate mother abroad to bypass France’s domestic legal restrictions. Here, we see that regulations already in place preconditioned new social practices that gave rise in turn to novel legal questions.

Comparison between the U.S. and France further illuminates the different choices of law made by the two countries’ legal authorities.  By extending the legal parenthood and citizenship from proof of a genetic relation to include the acts of gestation and giving birth, U.S. authorities reconfirmed that citizenship should be defined in biological terms. They admitted, however, that the regulations previously in place had defined the biology of motherhood too narrowly and therefore law needed to be brought in line with what technology had enabled. In effect, the U.S. decision affirmed the law lag narrative by conforming the law to a new understanding of reproductive biology.

This tacit delegation of normative authority to biological facts, however, is not universal, as the story of the French couple and their twin boys shows. In fact, French officials did not let their understanding of biology define the children’s civil status but rather evoked a set of norms that applied to their citizens whether they were conceiving children at home or abroad. According to French standards, surrogacy impermissibly exploits women and commodifies children. Merely banning the practice at home was not thought sufficient to meet French ethical demands, since citizens could always escape by engaging a surrogate mother in a country with liberal or no regulations on this matter. Hence, refusing to grant citizenship to children born through surrogacy abroad should be understood as France’s attempt to hold its citizens to French norms regardless where they happened to be in the world. Put differently, the country’s moral stance was thought to travel with its citizens, who were not allowed to break out of French normativity on so basic a matter as reproductive rights just because they were territorially no longer in France. Law in this sense took precedence over technology.

To sum up, each country invoked a different normative standard to admit biologically novel newborns to American and French citizenship, respectively (3). These contrasting solutions point to nation-specific imaginaries attached to different practices of technologically assisted reproduction, contrasting ideas about citizenship, and conflicting visions of how the future can and should be rendered governable in the face of late modernity’s rapid and destabilizing sociotechnical changes. STS critical tools that analyze not only technological outcomes but also the discourses that normalize (or fail to normalize) these outcomes help us to investigate further and to achieve a more profound and differentiated critique of biology and law. In this case it takes us beyond the simplistic assertion that the law always lags behind science and technology.

Keywords: law lag; assisted reproduction; parenthood; citizenship


  1. Chabin, Michele, “In vitro babies denied US citizenship,” USA Today, March 19, 2012.
  2. For example, see Jasanoff, Sheila (2007) ‘Making Order: Law and Science in Action,’ in E. Hackett et al., eds., Handbook of Science and Technology Studies (Cambridge, MA: MIT Press), pp. 761-786. Hurlbut, J. Benjamin (2015) ‘Remembering the Future: Science, Law and the Legacy of Asilomar,’ to appear in Jasanoff, Sheila, and Sang-Hyung Kim (eds), Dreamscapes of Modernity: Sociotechnical Imaginaries and the Fabrication of Power (Chicago: University of Chicago Press).
  3. Jasanoff, Sheila (2005) Designs on Nature. Science and Democracy in Europe and the United States. (N.J.: Princeton University Press).

Further Reading:

  • Jasanoff, Sheila (2011) ‘Introduction: Rewriting Life, Reframing Rights,’ in Jasanoff, Sheila (ed), Reframing Rights: Bioconstitutionalism in the Genetic Age (Cambridge MA: MIT Press), pp. 1-27.
  • Jasanoff, Sheila (2005) Designs on Nature. Science and Democracy in Europe and the United States. (N.J.: Princeton University Press).
  • Jasanoff, Sheila (1995) Science at the Bar: Law, Science, and Technology in America. (Cambridge, MA: Harvard University Press).
  • Hurlbut, J. Benjamin (2015) ‘Remembering the Future: Science, Law and the Legacy of Asilomar,’ to appear in Jasanoff, Sheila, and Sang-Hyung Kim (eds), Dreamscapes of Modernity: Sociotechnical Imaginaries and the Fabrication of Power (Chicago: University of Chicago Press).

Framing British Drug Policy

Ian McGonigle | 30 October 2014
Khat functions not simply as the drug molecule cathinone, but rather as a nexus where fears of immigration, illicit international trade, Islamic terrorism, and ethnic segregation collide with purely medical consideration.

Khat functions not simply as the drug molecule cathinone, but rather as a nexus where fears of immigration, illicit international trade, Islamic terrorism, and ethnic segregation collide with purely medical consideration.

The effectiveness and legitimacy of British drug control policy are both in serious question. This March the latest assessments of the harmfulness of so-called “legal highs” came under attack by Prof David Nutt and Dr Les King. They used the term “sloppy science” to partially account for the misuse of figures on the number of deaths resulting from legal highs, but it is now clear that drug control in Britain suffers from deeper problems. Expert medical opinion is routinely ignored while conservative opinion and vested political values sometimes prevail. Politics seems to have displaced science in the realm of drug policy, with the result that some drugs that should be controlled are not while others that pose little or no danger are. It is therefore high time to dig into the mechanics of drug policy, asking what drives decisions and how a faulty framing of the issues can lead to perverse outcomes. The herbal high “khat” provides a good example.

In July 2013 the UK government banned khat, an herbal stimulant plant that contains an amphetamine-like compound called cathinone. The pleasurable effects of chewing khat leaves are not unlike alcohol. They include increased libido, talkativeness and gregariousness, along with the inhibition of hunger, anxiety, and fatigue. Khat has been chewed recreationally in the Arabian Peninsula and the horn of Africa – where it is autochthonous – for centuries. In Yemen and Somalia, khat is particularly associated with sessions where men gather to chew in group settings. Such chewing sessions resemble in some respects the public sphere of the coffeehouses of the European Enlightenment. These sessions foster a form of civic participation predicated on friendly discussion and debate on issues of shared communal interest (1).

Khat is a controlled substance in most of Northern Europe, the US, and Canada, although it is legal in Israel, most of Africa, and South America. And khat recently became an object of concern in the UK, after so-called ‘khat pubs’ (mafrishes), popular with Somali, Yemeni, and Ethiopian immigrants, spread across the country. In the mafrish, people gather to chew khat, spend time together, and socialize among peers. Since many of these chewers are Muslims, the mafrish phenomenon’s spread in Britain has sparked fears that these spaces may be incubating ground for Islamic terror networks (2).

In July of 2013 the UK government decided to ban khat, flying in the face of medical expert opinion and ignoring the advice of its own Advisory Council on the Misuse of Drugs (ACMD). An ACMD report found that “the harms of khat does [sic] not [sic] reach the level required for classification,” and concluded that compared with other popular recreational substances, such as alcohol, tobacco, or cannabis, khat indeed presents a very low risk of harm (Fig. 1; 3, 4).

Instead of making its decision based on the low risk to health, the Home Secretary cited “broader concerns,” such as clamping down on the UK’s possible role as a channel for khat export to other countries where khat is already banned, and so to further alignment with other G8 and EU countries’ drug policies (5). Though the logic underpinning the ban is no longer medical, the UK still treats khat as a class C drug, a classification normally based on health concerns, making it illegal to supply or possess, and criminalizing the communities that use khat recreationally.

Anthropologist Axel Klein (6) claims that the ban will in fact promote crime, not reduce it. By pushing organized khat trade underground, the UK action will spur illegal smuggling; and by eliminating a sanctioned social space for chewing, the ban will drive Muslims into the mosques, increasing the religious authorities’ grip on communal activities, thereby seeding fundamentalism. The message to East Africans and Yemenis is that one of their most valued social traditions is not welcome in the UK, echoing the government’s anti-immigration policy.

More importantly, the ban demonstrates the British state’s ability to weigh the personal sovereignty of its citizens against its own sovereign power to dictate what sorts of subjects there should be. When it comes to recreational drug consumption, sovereignty weighs in favor of the legal homogeneity of the global North over the cultural heritage of immigrant groups. The khat ban thus provides a window into the logic of global governance and the captive role of science in state rhetorics of justification. In this case a formal apparatus of public health protection – drug classification – is deployed, even though the scientific evidence it delivers is set aside for the sake of a regime of political control. Khat functions not simply as the drug molecule cathinone that entails health effects of negligible concern, but rather as a nexus where fears of immigration, illicit international trade, Islamic terrorism, and ethnic segregation collide with purely medical consideration.

As a hybrid of relationships between facts and politics, khat should not be seen either as a potentially risky pharmacological entity or as disputed focus of international law. In the khat ban, a state legitimately committed to protecting its citizens’ health and well-being took advantage of the apparatus of public health decision making to enact a policy that rests on an altogether different logic: the Class C classification was deployed to protect the British community against imagined terrorism and threatened cultural fragmentation. Even while the traditional British pub falls victim to deregulation and loss of community, the khat pub was banned as a locus of undesirable socialization and civic activity.

As a site of contradiction, the khat ban highlights how drug policy aimed at reducing harm to individuals can rub up against deeper political currents such that the facts determined by experts may get supplanted by the political sensibilities of international Realpolitik. Science and technology studies (STS) scholars are trained to read such contradictions carefully and to map the “boundary work” carried out when a substance is framed as either a pernicious drug, a promoter of anti-social behavior, or a global policy issue, especially when boundaries are drawn at the cost of a broader debate on citizens’ cultural and political rights in a diverse society.

The field of STS works to knock down the walls between science, politics, and policy, elucidating connections that have escaped notice and opening up a forum for a wider range of critical voices. Indeed STS is centrally concerned with reconnecting science, technology, and society with core democratic values. For British drug control policy, the STS concept of “framing” well illuminates the miscarriage of justice and the decay of democracy at stake in the khat ban. Viewing a harmless social activity as a potential breeding ground for terror, the British state rendered medical expertise a pawn in the hands of power, a rhetorical piece to be used or discarded for political ends. This is a step toward scientific bankruptcy, signaling that science has value for drug policy decisions only if it fits the predetermined political frame. Politicians, policymakers, and regulators must therefore urgently restore the integrity of drug policy, listening to experts when science is at stake and consulting widely when the issues are political. That would help bring drug policy decisions into line with democratic values and indeed with common sense.

Keywords: framing; drug control; khat


  1. Wedeen, L. (2008) Peripheral Visions: Publics, Power, and Performance in Yemen. Chicago: University of Chicago Press.
  2. McGonigle, I. (2013) Khat: Chewing on a Bitter Controversy. Anthropology Today 29(4): 4-7.
  3. Nutt, D., King, L.A., Saulsbury, W., and C. Blakemore (2007) Development of a Rational Scale to Assess the Harm of Drugs of Potential Misuse. Lancet369(9566): 1047-1053.
  4. ACMD, (2013) Khat: A review of its potential harms to the individual and communities in the UK. London: Advisory Council on the Misuse of Drugs.
  5. UK Home Office Announcement (2013)
  6. Klein, A. (2013) The Khat Ban in the UK: What about the ‘Scientific’ Evidence? Anthropology Today 29(5): 6-8.

Further Reading:

  • Anderson, D. et al. (2007) The Khat Controversy: Stimulating the Debate on Drugs. London: Bloomsbury Academic.
  • Jasanoff, S. (Ed.) (2004) States of Knowledge: The Co-production of Science and Social Order. London: Routledge.

When Parisian benches have politics: Street furniture and strategies of spatial exclusion

Aurelien Bouayad | 26 March 2014
Spikes in front of doors are among a number of architectural street strategies used to deter homeless people. (copyright by Survival Group)

Spikes in doorways are among a number of architectural street strategies used to deter homeless people.         (copyright by Survival Group)

Haussmannian façades and art nouveau Metro entrances are what usually come to mind when one thinks of Parisian architecture, but the French capital has recently embarked on a new anti-homeless architectural trend, following the examples of other American and European cities (1). Of course, homeless people have long been the target of spatial segregation: from fencing to restrict access to delimited spaces to the locking of park gates and the installation of secure door entry system to bar entrance to apartment block staircases and communal areas. But beyond these traditional methods, usual elements of urban architecture are being increasingly redesigned to “subtly” deter long-term occupancy. From barrel-shaped benches, to cactuses, pebbles and spikes on ledges and doorways, these material strategies inspired by anti-skateboarder architecture (2) embody the same not-so-avowable objective: excluding homeless people from the use of public space.

In his now canonical—yet still controversial—article “Do Artifacts Have Politics,” Langdon Winner put forward the provocative argument that technical things in themselves have political qualities. Departing from the idea that technologies are neutral and only gain political dimension through the social circumstances of their development, deployment and use, Winner argues that technical devices “embody specific forms of power and authority.” His account of Long Island’s low bridges, designed to limit the access of public transit users—i.e., racial minorities and low-income groups—to the area’s resorts and beaches, reveals how the physical arrangement of urban space can embody political purpose. The notion of “disciplinary architecture” is sometimes used to refer to such methods aimed at shaping behavior through the built environment (3).

The development of anti-homeless street furniture tells a similar story; this time, it is a set of innovations in the design of devices that embody a strategy of spatial segregation against a particularly discriminated social group. This furniture was intentionally designed and installed in order to banish a social category from public spaces—and, consequently, from the sight of their fellow citizens (4). STS stresses the idea that technological developments do not take place outside society, independently of social, economic, and political forces. Here, the installation of these devices tells us something about how France deals with a major political taboo (5): by making it disappear. By materially deterring “long-term occupancy” of park benches and bank frontages, anti-homeless street furniture has a direct impact on the (in)visibility of homelessness. Being physically banned from the Polis, the homeless are out of the sight of politics—more than ever.

Indeed, one of the most striking features of these new benches, spikes and cactuses, is the way in which they very often go unnoticed by the average citizen—thanks to the “subtlety” of their design. In many cases, these installations are overlooked until they are made visible by activist groups.

In 2006, a group of researchers from the European Observatory on Homelessness detailed the deployment of these “deterrence by design” devices across major cities in Europe: “One of the strategies purposefully implemented at Warsaw Central has been the removal of old wooden benches—used by homeless people for resting and sleeping—and their replacement with plastic seats designed to deter such activity. […] Railway station managers are satisfied with the results as the seats are durable, easy to clean and deter long term occupancy by homeless people looking for somewhere to rest” (6). In France, the whistleblowers were members of a collective of photographers, Survival, who started to collect visual proof of these “anti-sites.” After their artistic production was relayed by national media (7), the phenomenon eventually reached collective consciousness and entered public discussion. The photographers’ work resonates with the spectacular actions of the “Sons of Don Quixote” activists who, in 2006, created a protest tent city at Canal St-Martin in north-eastern Paris to bring the issue of homelessness—however briefly—out of obscurity and into public view during the 2007 Presidential campaign.

Hence, the latest deployment of disciplinary architecture in Paris demonstrates once again that we need to pay careful attention to what—and who—is made invisible, for such moves very often hide the exercise of power and authority. Writing about such phenomena, aimed at bringing the dark to light, remains a critically important project for STS.

Keywords: visibility; spatial exclusion; disciplinary architecture; technology studies


  1. The phenomenon, indeed, is not so new. In City of Quartz, his classical study of the city of Los Angeles published in 1990, Mike Davis already noticed how street furniture was increasingly integrated in social segregation schemes.
  2. Skateboarders have indeed been increasingly excluded from the streets by the invention and the quick spread of “skate deterrents“—typically metal brackets that attach to benches or low walls.
  3. The method echoes with the recent controversies over the infamous Mosquito technology, a device used to deter young people loitering by emitting a high frequency sound (see this coverage broadcasted by CNN in 2010).
  4. For a broader illustration of these questions, see T. Gieryn, “What Buildings Do,” Theory and Society, Vol. 31, No. 1 (2002), pp. 35-74.
  5. In July 2013, the French National Institute of Statistics (INSEE) released a report showing that the number of homeless people in France has risen by 50% between 2001 and 2012, despite repeated political commitment of eradicating homelessness.
  6. European Observatory on Homelessness,“Homelessness and Exclusion: Regulating the Public Space,” 2006, p. 9.
  7. Le Monde, “Paris se hérisse contre les SDF,” 31 December 2009.

Further Reading:

  • M. Foucault, Discipline and Punish: The Birth of the Prison. New York: Vintage, 1979.
  • L. Winner, “Do Artifacts Have Politics,” in The Whale and the ReactorA Search for Limits in an Age of High Technology. Chicago: University of Chicago Press, 1986, pp. 19-39; but see B. Joerges, “Do Politics Have Artefacts?” Social Studies of Science, Vol.29, No. 3 (1999), pp. 411–431.
  • S. Woolgar, “The Turn to Technology in Social Studies of Science,” Science, Technology & Human Values, Vol. 16, No. 1 (1991), pp. 20-50.

‘Nature’s’ (un)surprising lessons about Italy

Ingrid Metzler | 23 October 2013
Parents of children suffering from rare diseases, for whom stem cell therapy provides a glimmer of hope, appealed to the Italian government to keep stem cell clinics open by participating in diverse public forums, including the popular TV show 'Il Iene.'  They acted neither as patients nor as consumers; instead, they acted as outraged citizens.Appearing on Italian TV show, 'Le Iene' and in other public media

Parents of children suffering from rare diseases, who appeared in various public fora, including the popular Italian TV show ‘Le Iene,’ to protest the government’s closure of clinics offering stem cell therapies, acted neither as patients nor as consumers; instead, they acted as outraged citizens.

When Italian science makes it to Nature, the prestigious British science journal, it is hardly ever good news for Italy or Italian science (1-3). Often, such news does not describe scientific breakthroughs, but interactions between Italian science and the Italian state. Written in concerned if not outright dismissive language, such reports tend to say more about how Nature thinks political authorities should deal with science than they do about why Italian authorities choose to act as they do. And, yet, it would be rash to dismiss these articles as quickly as they dismiss Italy. For one thing, they remind us about the importance of actors such as states.

Let us turn for instance to Alison Abbott’s March 26, 2013 report about “Stamina,” an Italian foundation that offered dubious stem cell therapies to patients, mostly children suffering from serious illnesses (3). The availability of such treatments, offered to patients in the absence of compelling evidence of their safety and efficacy and outside of standardized research protocols, was not new. Over the past couple of years, clinics offering dubious therapies have mushroomed around the globe, creating concerns for stem cell scientists, bioethicists, and regulators, who see the lives of patients as well as the future of the entire stem cell field placed in jeopardy.

What set the Stamina case apart from the others, effectively transforming it into a case about Italy rather than about science, was that Stamina had apparently received some sort of official political blessing from the Italian authorities. In Abbott’s words:

Clinics that offer unproven stem-cell treatments often end up playing cat and mouse with health regulators, (…). In Italy, however, one such treatment now has official sanction. The country’s health minister, Renato Balduzzi, has decreed that a controversial stem-cell treatment can continue in 32 terminally ill patients, mostly children — even though the stem cells involved are not manufactured according to Italy’s legal safety standards. (3)

Abbott’s otherwise very informative article did not make an effort to understand why Balduzzi decided to allow the compassionate use of these therapies. She did not give any voice to the health ministry, but focused instead on the comments of concerned Italian scientists. For the rest, the article depicted an assemblage of patients who failed to understand science, irresponsible journalists who misinformed publics, and state authorities that listened to popular demands rather than to scientists and their expert advice. The article, in short, presented the “deficit model” of lay actors that most STS scholars are familiar with—the model that sees publics (and policy makers) always in deficit because they fail to understand science properly and, as a result, act irrationally.

While it is tempting to look at this article through the same “deficit” lens that the article itself applies to Italy, merely reversing the accusation does not seem a promising strategy. It may be more helpful to take Nature’s framing seriously, but to add a little bit of complexity.

Perhaps, indeed, the Stamina case was all about inappropriate state action – but inappropriate in political rather than scientific terms. After all, as Abbott describes, the case gained notoriety when Italian health authorities made an effort to close Stamina’s doors back in 2012. Then, parents of children suffering from rare diseases contested this apparently unmotivated act of law enforcement. Some appealed to the courts. Others appealed to the President of the Republic via Facebook, or assembled in the streets.

Parents of children suffering from rare diseases also made it to Le Iene, a famous weekly TV show, that dedicates a lot of time to the failures of the Italian state, often with a big dash of irony. The prominence of this very stage suggests that Italian citizens were caught up in an episode of what Sheila Jasanoff describes as “civic dislocation,” that is a radical “mismatch between what governmental institutions were supposed to do for the public and what they did in reality” (4). In such moments, citizens often turn to non-state institutions for the trust and reassurance that they ordinarily expect from the state. Italian citizens had not necessarily failed to understand the science, in which they were perhaps not even particularly interested. More clearly, they did not understand the arbitrary actions of the public authorities and contested them in consequence. They acted neither as patients nor as consumers; instead, they acted as outraged citizens.

The concerns of Italian scientists, so well represented in Nature, should not be ignored. No doubt, they should have a say in what therapies are offered to people with illnesses. Putting the Stamina case in the context of Italian politics, however, suggests that stem cells are not only the property of science and scientists. They are also common property, since state authorities – and citizens and publics along with them – participate in envisioning how scientific advances should be harnessed in caring for the bodies and lives of citizens. The Nature article seems aware of this dimension of what Jasanoff and others have termed “bioconstitutionalism” (5). Yet, the article is based on a tacit assumption about how science ought to be enrolled in health care, taking it for granted that investing in scientific research and translating scientific advice into policy are the only ways in which a state should cater to citizens’ needs. And, yet, the Stamina story suggests that this assumption should not be naturalized too quickly. Other visions and settlements exist, for example, states may seek public input on how to balance the risks of experimental remedies against the demands of desperate citizens. Dismissing such balancing acts as mere irrationality might backfire in a future in which science depends on finding common interests with citizens.

Keywords: stem cells; public understanding of science; civic dislocation; bioconstitutionalism


  1. Abbott, Alison. “Italians sue over stem cells,” Nature, 460 (19), doi:10.1038/460019a, 2009.
  2. Shock and law.” Nature, 490: 446, doi:10.1038/490446b, October 23, 2012.
  3. Abbott, Alison. “Stem-cell ruling riles researchers,” Nature News, 26 March 2013.
  4. Jasanoff, Sheila. “Civilization and madness: the great BSE scare of 1996.” Public Understanding of Science, 6 (3): 221-232, 1997
  5. Jasanoff, Sheila, ed. Reframing Rights: Bioconstitutionalism in the Genetic Age. MIT Press, 2011.

Further reading:

  • Jasanoff, Sheila, ed. Reframing Rights: Bioconstitutionalism in the Genetic Age. MIT Press, 2011.
  • Ruha, Benjamin. People’s Science. Bodies and Rights on the Stem Cell Frontier. Stanford University Press, 2013.

DNA: It’s not just for life anymore

Elizabeth Barron | 29 July 2013
An animated DNA molecule from 'Jurassic Park'.  Recent developments in nanobiotechnology can bring to mind science fiction, but STS teaches us to go beyond thinking of the dangers of these technologies in terms of “loss of control.”

An animated DNA molecule from ‘Jurassic Park’.
Recent developments in nanobiotechnology can bring to mind science fiction, but STS teaches us to go beyond thinking of the dangers of these technologies in terms of “escape” and “loss of control.”

At the Wyss Institute for Biologically Inspired Engineering at Harvard University, researchers have developed robotic devices made from DNA which they hope will eventually be used to treat various diseases (1). Modeled after the white blood cells of the human immune system, these nanobots are designed like little trucks, conveying “molecular messages” to diseased cells to tell them to commit suicide. In other words, the nanobots search and destroy targeted human cells of the designer’s choice. In an interview with Twig Mowatt for the Harvard Gazette (February 12, 2012), principal investigator George Church pointed out that these nanobots are a major breakthrough in DNA nanobiotechnology research. When I read this article all I could think was, “Didn’t anyone at the Wyss Institute see The TerminatorJurassic Park?? The Matrix???”

Science fiction is replete with stories in which the melding of biology and technology has had catastrophic consequences. The idea that nanobots, or similar cybernetic technologies, might depart from their human-designed conduct and develop some form of intentionality, akin to viruses, has inspired some of the most frightening stories. Viruses target cells and take over their metabolic processes for a time, and then destroy them. In fact, the primary difference between nanobots and viruses is that the nanobots are designed to destroy targeted cells immediately. If we are to take advances like those discussed in the Mowatt article seriously, as only an additional step on a path of ever-improving nanobiotechnologies, it is quite possible that rogue nanobots could potentially be even more dangerous than highly infectious viruses.

The discovery of DNA in the mid-20th century radically altered scientists’ conception of nature, and since that time biology has been increasingly reduced to DNA. With the development of nanobots, DNA has become the fundamental building block for life and for machines. The amino acids that were used to create the nanobots are the same ones that form DNA fragments, which bind to form the genetic code for all living things on this planet, and arguably many of their traits and behaviors as well. Researchers and reporters emphasize that nanobots have great therapeutic potential because they are “biocompatible” and “biodegradable.” Yet, functionally, they straddle the line between biology and information, which is what makes them economically as well as therapeutically valuable.

Donna Haraway has written, “engineering is the guiding logic of life sciences in the twentieth century” (2). Arguably, the revolutionary moment in the life sciences of the 20th century was not the discovery of the structure of DNA per se, but rather the re-envisioning of nature as systems driven by DNA. Much like Foucault in his classic text, The Order of Things, Haraway sees the development of the life sciences and technologies in the 20th century through lenses that reveal scientific breakthroughs to be the products of cultural history and political economy in ever-shifting relations. In the early 21st century, Haraway argues, these relations are increasingly cybernetic interventions that are as profitable for the health industry as they are promising for the people with diseases.

STS scholars might re-read the Harvard Gazette article with these analyses in mind. Situating new discoveries in the health industry in relation to political economy and cultural history, one might read Mowatt’s version of the DNA nanobot story as one in which the belief that humans can control nature trumps the belief that we do not. Thinking about the DNA robot story in Haraway’s terms encourages us to shift our attention from the language of “major breakthroughs” and “implementation obstacles” to a series of questions the article does not ask about the use and misuse of DNA based technologies for human ends. What does it mean morally and ethically to transition from DNA as the building block of biotic life to DNA as the building block of biotic and abiotic life? Who decides what the best uses for DNA-related technologies are, and what might the biological sciences look like if they were not driven by corporate interests? If DNA is a key driver of natural systems and also the point of human intervention, are novel discoveries and financial gains (like those in nanobiotechnology) worth possible risks to humanity (like those envisioned in science fiction)?

In the Harvard Gazette article about DNA nanobots, just as in the beginning of Jurassic Park, there is no mention of unforeseen consequences and possibly problematic outcomes. Instead, the “right” combination of biology and technology begets a perfectly functioning, closed system in which human-made and human-controlled robots kill only cancer cells. Cancer patients live, companies profit. This clean vision should arouse suspicion: the dinosaurs do escape from Jurassic Park, and in The Terminator and The Matrix human-created sentient technology develops its own ideas about what its existence should be about. But Foucault and Haraway, and STS more generally, teach us to go beyond thinking about the dangers of these technologies simply in terms of “escape” and “loss of control.” They inspire us to ask additional questions informed by the knowledge that science is always already a part of a constantly changing social world: What if the next step at the Wyss Institute was to enable these nanobots to read all genetic code inside the body, and to self-determine what should be destroyed so that they can fix not only cancer but any other “problems” they find? What then?

Keywords: biotechnology; genetic engineering; machine life


  1. Mowatt, Twig. “Sending DNA robot to do the job.” Harvard Gazette, February 12, 2012.
  2. Haraway, Donna J. Simians, Cyborgs, and Women: The Reinvention of Nature. New York: Routledge, 1991: 47.

Further Reading:

  • Benjamin, Ruha.  People’s Science: Bodies and Rights on the Stem Cell Frontier. Palo Alto, CA: Stanford University Press, 2013.
  • Eribon, D. Michel Foucault. Betsy Wing (translator). Cambridge, MA: Harvard University Press, 1991 [1989].

Subsidiarity for Integration: Crafting European Chemicals

Henri Boullier | 19 June 2013
What can the regulation of a chemical tell us about relations among nations states?

What can the regulation of a chemical tell us about relations among nations states?

On June 1, 2011, all baby bottles containing Bisphenol A (BPA) were removed from stores everywhere in the European Union (EU) following the very first international ban on the substance. This ban was a response to many differences in regulation of BPA among Member States. The European Commission press release for the occasion drew attention to these discrepancies: “In 2010, France and Denmark had taken national measures to restrict the use of Bisphenol A. France focussed on baby bottles only, while Denmark targeted also other food contact materials intended for children.”

If the European BPA decision intended to correct for differences in Member State policies about chemicals, this harmonization was short-lived. Five months later, in October, the French National Assembly banned the use of BPA for any type of food packaging, surpassing both the European ban on the use of BPA for baby bottles, and the Danish ban on food materials intended for children. That decision was justified by a report prepared in the context of the REACH Regulation (1), by the French Agency for Food, Environmental and Occupational Health Safety (ANSES), whose recommendations challenged the conclusion of the European Food Safety Authority that the substance was safe for food contact applications. The ANSES report showed that the ingestion of BPA produces “‘recognized’ [harmful] effects in animals and other ‘suspected’ effects in humans (on reproduction, metabolism and cardiovascular diseases)” and recommended reducing population exposure to BPA (2). By following ANSES recommendations, French authorities appear to go against European-wide policies like REACH that are designed to harmonize chemical regulation among Member States so as to offer equal protection to all European citizens. Instead of supporting harmonization, the French apparently opted for subsidiarity, insisting on the independence of French expertise (3). A closer look shows, on the contrary, that ANSES’ recommendations on BPA, as that of other national agencies on different chemicals, feed the expertise necessary for European decisions to be made. The lens of chemical regulation enables STS researchers to analyze relations among nations, taking into account the complex linkages among the local, regional, and global levels where chemicals -and their risk assessments- circulate.

Because REACH work routines are not in place yet, ANSES benefits from a good deal of discretionary power in the European procedures: the decision to study BPA further in spite of the European decision on baby bottles, the literature review, the selection of strategic data, the pitch and the rationale of the case are largely choices made by ANSES. On their website, ANSES confirms “the health effects of BPA for pregnant women in terms of potential risks to the unborn child” (4). The ANSES study, they add, “was carried out as part of a multidisciplinary, adversarial collective expert appraisal,” with a “working group specifically focusing on endocrine disrupters.” The specificity of the French agency’s expertise on BPA partly lies in its ability to put forward their strategic research orientation on endocrine disruptors: BPA had been for several years part of an ambitious program that included “mandates on risk assessment, scientific monitoring and reference activities for endocrine disruptors” (5). This program is a major orientation of the agency, as endocrine disruptors are seen as political issue in France. Working on BPA, using the knowledge produced with this program and having the national restriction in baby bottles adopted at the European level suggest that an agency’s discretion can encourage European-wide restrictions. The novelty of REACH provides a valuable window of opportunity to the French agency to implement practices of subsidiarity, of what the procedures should be, based on the national agenda and ANSES’ ongoing research programs.

The BPA case is an example of producing European regulatory science by maintaining local control of expert judgment. EU institutions are often accused of lacking democratic accountability and legitimacy compared to Member States. With BPA, the practices of subsidiarity previously described show that the alleged democratic deficit is not systemic: national decisions can be used at the European level. It was this logic that led to the European ban of BPA in baby bottles to begin with. In a way, the discrepancies of expertise between Member States eventually lead to harmonization: European regulatory science, for instance in the REACH case, is in fact produced at the level of national health safety agencies that manage to create their own vision of doing expertise in the EU.

Keywords: regulatory science; Europeanization; chemical regulation


  1. The Registration, Evaluation and Authorisation of Chemicals (REACH) is a European-wide regulation that was adopted in 2006 and that addresses the production and importation of chemical substances in the European Union.
  2. ANSES. “Effets sanitaires du bisphénol A, Rapport d’expertise collective,” September 2011.
  3. The subsidiarity principle is based on the idea that decisions must be taken as closely as possible to the citizen: the European Union should not undertake action, except on matters for which it alone is responsible, unless EU action is more effective than action taken at national, regional or local level.
  4. ANSES. “Opinion of the French Agency for Food, Environmental and Occupational Health & Safety on the assessment of the risks associated with bisphenol A for human health, and on toxicological data and data on the use of bisphenols S, F, M, B, AP, AF and BADGE,” 2013.
  5. ANSES. Presentation of the work of ANSES on endocrine disruptors, 2013.

Suggested further reading:

  • Brickman, R., S. Jasanoff, and T. Ilgen. Controlling Chemicals: The Politics of Regulation in Europe and the U.S. Ithaca, NY: Cornell University Press, 1985.
  • Demortain D. Scientists and the Regulation of Risk. Standardising Control. Cheltenham, UK and Northampton, MA: Edward Elgar Publishing, 2011.

Just a name, just a number? A commentary on CERI’s recent merger at the OECD

Sebastian Pfotenhauer | 23 April 2013
STS can help us to make sense of the causes and consequences of an increasingly numbers-based educational policy.

STS enables us to understand the consequences of an increasingly numbers-based educational policy.

In 2012, the Organisation for Economic Co-Operation and Development (OECD) – an international organization and policy think-tank comprising 34 of the wealthiest and most developed nations of the world – decided to form a new sub-unit in its Directorate for Education. This new Division for Innovation and Measuring Progress was created by a merger of two long-lived predecessor units, the Centre for Educational Research and Innovation (CERI) and the Division for Indicators of Educational Systems. By many inside and outside the organization, this merger was interpreted as disadvantageous for CERI, renowned for long-term, conceptual, and qualitative policy research, as it arguably subordinates CERI to the stronger quantitative arm of the OECD. In this commentary, I offer a defense of CERI’s important role within an organization such as the OECD, and caution against some risks of this merger. I hope to speak to both the policy-makers in government as well as academic scholars in the qualitative social sciences who frequently lament how rarely they find certain voices represented in transnational policy contexts and organizations.

Over 50 years, the OECD has become a heavyweight of economic analysis and forecasting and emerged as one of the obligatory passage points for collecting cross-country statistical data. Far beyond its economic mission, the OECD has built a strong reputation for quantitative policy analysis in domains including science, technology, and education. For example, in education it has been administering large-scale international surveys such as PISA (the Programme on International Student Assessment), the results of which have had tremendous impact on national education policies.

Though its quantitative policy analysis has primacy, the OECD has also gained a reputation as a forum for conceptual, critical, and forward-looking thought on emerging “big issues.” CERI has been a stronghold of this lesser known side of the organization. In the words of its long-term director Jarl Bengtsson, “CERI was created [in 1968] in part to provide a complement to such [quantitative and manpower] approaches to education through a more qualitative focus on educational research and innovation,” as well as a response to the “challenges to the ways that society had evolved up to then, symbolized by the revolts of Spring 1968.” CERI’s work has, for example, contributed significantly to the notions of “interdisciplinarity” and “transdisciplinarity,” coined prominently by Erich Jantsch at a 1970 CERI symposium. CERI has also broken ground on how to re-design education and teacher training in light of the dawning information age and computerized manufacturing.

Against this background, how can we evaluate CERI’s absorption into a quantitative unit? From an STS perspective, at least four cautionary points are worth making. First, indicators are performative. They tend to create the very worlds they seek to measure by enacting a discourse space in which unmeasured effects do not exist. They focus attention on performance according to some pre-defined axis of achievement, thus sidelining questions of whether an indicator measures the right thing. An overly strong emphasis on quantitative analysis in particular risks foregoing valuable thinking outside the box, sometimes prompting unintended consequences (e.g. the “studying-for-the-test” phenomenon in education).

Second, the crowding-out of qualitative by quantitative analysis follows a certain ideal of rationality that has dominated the international policy landscape for decades. In this ideal numbers are understood to be objective and, like scientific truth, apolitical. Quantitative analysis promises rational solutions, diminishing the need for messy political processes. Yet, this view overlooks the fact that numbers themselves are immensely political. The political process merely gets shifted upstream to decisions about what to measure and how. While this shift does not take the politics out of policy-making, it arguably makes politics more clandestine and less accessible to contestation. By turning into even more of a data production factory, the OECD may reduce its risk of getting tangled in fierce political debates, but it also loses some of its democratic appeal.

Third, it is a common criticism that numbers, while enabling comparison, come with a certain crude oversimplification that doesn’t do justice to the sometimes vastly, sometimes subtly different contexts of individual countries. Rather than numbers, other factors like political culture, national visions, or historically rooted anxieties of a society might be more indicative of whether or not a certain policy will be successful. These are the stuff of “thick” qualitative analysis. Consequently, a sole focus on numbers might well miss some of the unique opportunities and benefits provided by international organizations capable of such cross-country analysis.

Fourth, a possible erosion of CERI will be disproportionally more burdensome for less wealthy OECD member states. Many small countries cannot afford the speculative, long-term, big picture-type of policy research that CERI has been conducting. In contrast, big countries like the US may easily resort to their own agencies and policy think tanks. Qualitative policy research units at international organizations, then, represent unique intellectual resources for small countries, allowing them to voice concerns about important but still intangible issues and to shape policy agendas about global problems. National problems and solutions that might otherwise go by unnoticed by the international community may have a greater chance of being heard as broader problems and “best practices” by a global audience when picked up by international organizations.

To be fair: None of these potential negative consequences necessarily follow from CERI’s merger. Yet, the consequences of the merger should be assessed early, and in qualitative and non-formalistic terms that echo the CERI mission. STS scholars and like-minded policy analysts should care about the fate of CERI (and similar organizational units in mainstream policy organizations), since it directly affects how emerging policy issues are being framed and whose voices are being heard, particularly in an international context. Quantitative policy analysis is today the bread and butter of informed policy-making. Yet, numbers and their resulting policy agendas are incomplete without the context-rich, exploratory and more conceptual type of policy work that CERI provides, which is why a word of caution about the importance of organizational balance seems appropriate.

Keywords: quantification; cross-national comparison; education and innovation policy

Suggested Further Reading:

  • Geoffrey Bowker and Susan Leigh Star (1999). Sorting things out: Classification and its consequences. Cambridge, MA: MIT Press.
  • Jantsch, Erich (1970). “Interdisciplinary and Transdisciplinary University—systems approach to educations and innovation.” Policy Sciences 1(4), 403–428.
  • Sheila Jasanoff (2004). States of knowledge: The co-production of science and social order. London: Routledge.
  • OECD (1986). New Information Technologies: A challenge for education. Paris: OECD.
  • James Scott (1999). Seeing like a state: How certain conditions to improve the human condition have failed. New Haven, CT: Yale University Press.
  • Deborah Stone (2001). Policy paradox: The art of political decision-making. New York, NY: W.W. Norton & Company.

The plunger does not have to stop at the bottom of the coffee pot: A lesson on re-framing social reality

Margo Boenig-Liptsin | 12 March 2013

Does reordering space necessarily create more freedom? Drawing of Mark Brest van Kempen's "Free Speech Monument," showing altered space in red, 1991-1994 (photo: Baile Oakes).

In March 2012, the libertarian-led Seasteading Institute announced that it was launching the Blueseed project. The goal of the Blueseed project is to circumvent the American visa processes for Silicon Valley workers by organizing a floating city twelve miles off the California coast (putting it in international waters) that would be subject to no national jurisdiction (1). Blueseed is the first step towards a more ambitious goal of the Institute to station independent colonies in the ocean that could, their creators hope, become laboratories in alternative forms of social organization (2). In the name of greater human liberty, this project boldly challenges accepted relations among individuals and nation-states–relations that are organized through legal and normative  institutions such as visa regimes, taxation and citizenship (3). But does using new technology to bypass older regulatory institutions actually create a society of greater liberty?

Breaking through physical bounds is often associated with gaining freedom, but is this promise always kept? Does reordering space necessarily create more freedom of movement? William Kentridge’s short animated film, Mine, about the mining industry in South Africa, poignantly turns these expectations on their head (4). In a key scene, a breakfasting mine owner presses down on the plunger of a French-press coffee pot. Instead of stopping at the bottom of the pot as expected, the plunger bores down through the table, through the floor of the breakfasting room, descends through the barracks of the mine workers and becomes the mine shaft in whose black crevices dark silhouettes labor.

The key to making this film, Kentridge says, was his discovery that in the world created with his pencil, “The plunger does not have to stop at the bottom of the coffee pot” (5). The image of the burrowing plunger challenges what sociologist Erving Goffman calls “frames,” the conventional premises with which people organize and interpret reality (6). The scene transgresses the frame of physical reality, in which the spaces inhabited by the mine owner and the miners are neatly separated. The tunnel made by the plunger re-frames the viewer’s experience of reality, enabling her to see the oppressive relationship between mine owner at his breakfast table and the miners laboring below.

Similarly to Kentridge’s plunger, the Blueseed project challenges a frame of spatial and political reality, namely the one that connects individuals to collectives through the nation-state. However, unlike Kentridge’s film which creatively uses the moment of the broken frame to reveal a previously invisible relationship between mine-owner and miners, the Blueseed project draws attention to the difficulties and frustrations of the public sphere without providing a solution that genuinely disrupts the visa regime’s capacity to discipline bodies.

On the surface, a no-visa regime seems to escape the exclusionary controls of a visa regime, but in terms of human liberty there may be no great difference. This is because liberty is a product of a particular hierarchy of relations between the individual and the collective — relations that are not necessarily transformed by legally and physically circumventing the institutional form of the collective that is the government.  The aim must be to re-frame or to provide a viable alternative to the relationships of dominance that hold people in their grip. What alternative does Blueseed provide?

By treating liberty issues surrounding the existent visa regime as a problem that can be solved by re-arranging bodies in space, Blueseed implicitly re-frames the employee as a laboring body.  In contrast to the laboring bodies in Kentridge’s film, employees aboard the Blueseed ship are promised luxurious accommodations.  But this attention to the space of the ship and the care for the bodies of the people on it only emphasizes the fact that physical comfort is considered to be the primary component of liberty.  Meanwhile, non-spatial normative aspects to being a free human being, in particular to be responsible and to care for people of different generations and to build a community together, are not discussed. The cost of liberty of an employee that is framed as a laboring body can be calculated by the employer and, if the equations balance favorably, it can be bought. It is telling that since its launch, Blueseed has officially split from the Seasteading Institute, becoming its own business organization that is no longer explicitly interested in promoting liberty but rather in making money on the visa-boat venture. The goal of increasing liberty is seamlessly integrated into a money-making enterprise.

In a world in which scientific and legal definitions (e.g., of life) (7) are continuously in interplay with one another, it is not surprising that a state-of-being made possible by technology (such as long-term life at sea with all comforts and full connectivity) can destabilize legal and conceptual categories of “employee” and “citizen.” But, contrary to Patri Friedman’s claim, these floating technologies cannot create a “blank space” free of any prior frame of reference or control (8). We must be attentive to how technologies that claim to destabilize old frames are actively re-framing social reality in ways that may perpetuate the same underlying inequalities.

The experience of a frame being broken is destabilizing, but, if properly re-framed can lead to joy and release at seeing the world anew. The Seasteading Institute can be contrasted in this respect with another effort to carve out a space not subject to any entity’s jurisdiction: the Freedom Hole created to commemorate the Free Speech Movement at University of California, Berkeley campus (9). This monument is a hole six inches in diameter filled with dirt and surrounded by an inscription that reads, “This soil and the airspace extending above it shall not be a part of any nation and shall not be subject to any entity’s jurisdiction.” At just twice the width of the hole that might be made by Kentridge’s coffee plunger, the Freedom Hole is not big enough to accommodate a human being. Yet, through its invocation of a historical moment in which Berkeley students stood up for the right to speak freely against their state, it offers infinite space for the human spirit to rise above earthly constraints and feel itself unbound.


  1. Dascalescu, Dan. “Blueseed.” The Seasteading Institute, November 14, 2011.
  2. Patri Friedman, in a promotional video for The Seasteading Institute, “Vote With Your Boat.” December 13, 2012.
  3. Garraghan, Matthew. “Seachange.” Financial Times, March 30, 2012.
  4. Kentridge, William. Mine. 1991.
  5. Kentridge, William. Lecture 3, Norton Lectures. Harvard University, April 3, 2012.
  6. Goffman, Erving. Frame Analysis: An Essay on the Organization of Experience. Cambridge, MA: Harvard University Press, 1974.
  7. Jasanoff, Sheila. Reframing Rights: Bioconstitutionalism in the Genetic Age. Cambirdge, MA: MIT Press, 2011.
  8. Friedman, ibid.
  9. Brest van Kempen, Mark. “Free Speech Monument,” 1991-1994.

Keywords: frames, liberty, space

Suggested Further Reading:

  • Goffman, Erving. Frame Analysis: An Essay on the Organization of Experience. Cambridge, MA: Harvard University Press, 1974.
  • Jasanoff, Sheila. Reframing Rights: Bioconstitutionalism in the Genetic Age. Cambirdge, MA: MIT Press, 2011.

Negotiating relationships and expectations in synthetic biology

Emma Frow | 20 February 2013

How should expectations and responsibilities be managed when engineers, natural scientists, and social scientists collaborate?

Public funding bodies that invest in new and potentially controversial areas of scientific research in the US and UK increasingly stipulate that a portion of their funding should be devoted to studying the broader implications of the research being done. For the emerging field of synthetic biology, the US National Science Foundation (NSF) has promoted active collaboration among engineering, natural science and social science researchers in the research center they set up in 2006 (the Synthetic Biology Engineering Research Center, or SynBERC).

An article by Jennifer Gollan in the 22 October 2011 edition of the San Francisco Bay Area New York Times threw into the media spotlight the sometimes fraught nature of such interdisciplinary collaborations. Entitled ‘Lab fight raises U.S. security issues,’ this article reports on the breakdown of the relationships between senior SynBERC scientists and Paul Rabinow, a distinguished anthropologist and (until earlier that year) the head of the social science research thrust at SynBERC. Gollan frames the piece around potential biosafety implications of synthetic biology, and devotes significant attention to some of the personal conflicts that seem to underlie this breakdown. Individual personalities and relationships are undoubtedly an important dimension of the story, but this development also points to deeper questions about interdisciplinary collaborations, and the distribution of expectations and responsibilities in new fields of science and technology.

Reading this article, it seems that the NSF, the senior scientists and administrators at SynBERC, and Rabinow’s team of anthropologists all had different expectations of the role that social scientists could and should play in the SynBERC center. The NSF seemingly hired Paul Rabinow as a “biosafety expert,” despite the fact that Rabinow’s long career as an anthropologist had not focused on biosafety matters. Furthermore, the scientists and industrial partners seemed to have expectations that Rabinow’s team would produce “practical handbooks” and “advice on how to communicate with the public in case of a disaster” — work that is highly instrumental and not traditionally associated with anthropological scholarship. While Rabinow and his team suggest that they did outline “practical methods to improve security and preparedness,” it looks like their efforts were not understood or championed enough by the scientists within SynBERC to be considered useful.

Rabinow’s team had stated ambitions of developing much more theoretically sophisticated work on synthetic biology than simple biosafety preparedness plans. But in accepting funding from a scientific research organization wanting to promote capacity in biosafety (purportedly $723,000 over 5 years, a large sum for the social sciences), did they implicitly agree to put themselves in a service role? How might their desire to conduct good scholarship (according to the standards of social scientists) be balanced with the wishes of research funders and scientists? The dominant public framing of concerns about synthetic biology in terms of risk, biosafety and biosecurity obscures other issues that merit systematic enquiry, for example questions about the redistribution of power and capital, and the reconfiguration of relationships between states, industries and citizens that might emerge with new technologies like synthetic biology. Do scientists or their federal sponsors always know best what the relevant ‘social’ questions are, or where and how to intervene in the complex terrain of science and democracy? Who should be trusted as having the expertise to set innovative research agendas for the social sciences? These sorts of questions acquire new salience as a result of the way that funding initiatives like SynBERC are being structured.

The SynBERC case is an invitation for both scientists and social scientists to think about what good collaboration across disciplines means. Judging from the Gollan article, it seems as though five years into SynBERC’s activities there has been little progress on the part of all parties involved to move beyond initial expectations of what different academic disciplines might contribute to synthetic biology. At least some of the SynBERC funders and scientists seem to have fundamentally misunderstood what social scientists do, and may have entertained false expectations of what might be achieved through such collaborations. Collaboration with social scientists is not the same as buying an insurance policy against the effects of a biosafety accident or a public backlash against synthetic biology. But rather than placing blame solely on the scientists’ shoulders, I think such developments also pose a direct challenge to those of us STS researchers studying synthetic biology to better articulate what it is we think our research entails and what kinds of contributions we are able — and willing — to make to scientific, policy, and public discussion. If we can’t do this it will be hard to negotiate expectations and develop constructive relationships with the communities we study and with which we engage. As these relationships become increasingly institutionalized by funding agencies, early and open discussion of these issues should be seen as a necessary part of the research process.

Keywords: expectations; interdisciplinarity; synthetic biology

Suggested Further Reading:

  • Rabinow, P. & Bennett, G. 2012. Designing Human Practices: An Experiment with Synthetic Biology. Chicago: University of Chicago Press.
  • Calvert, J. & Martin, P. 2009. “The role of social scientists in synthetic biology.” EMBO reports 10(3): 201-204.

Patients Need a Voice in Shaping the Practice of Clinical Genomics

Dustin Holloway | 4 February 2013

Whose voice is the master when it comes to determining how genetic data is defined and used in the clinic?

It’s 2019, and your cancer treatments have finally finished. Your doctor has proclaimed you cancer free, but the struggle was difficult. When you first had your genome sequenced, you received a report that showed no genetic variations of concern. But after your diagnosis with skin cancer, you decided to have your genome sequenced again through a private provider. Shockingly, the new report described a genetic mutation that suggested a 25% increased risk of skin cancer. Furious, you asked your doctor why this result wasn’t revealed in the earlier test. He explained that the genetic association with skin cancer was not fully studied, and the 25% increased risk was not, by itself, considered a “clinically actionable” result. Had you been aware of this possible risk sooner, perhaps you would have been more careful about using sunscreen… perhaps you would have inquired about your family’s history with cancer. Instead, the decisions made by the medical community about which information is ready for dissemination and which is not preempted any action on your part. Today, as DNA sequencing is just beginning to enter the clinic and before such situations become reality, is it time to rethink who controls the information in our genomes?

While doctors are largely embracing the diagnostic power of whole genome sequencing (WGS), they are rightly worried about how the responsibilities and liabilities of this technology will be apportioned. At the heart of the current debate is the definition of the term “clinically actionable.” A genetic sequence that reveals, for example, Duchenne muscular dystrophy is clinically actionable because doctors have medical interventions that help manage the illness. But if such medical steps are unavailable, then the test results may be classified as “incidental findings” and never reported to the patient. By the time you get your test results, established medical ontologies that categorize your data may have already decided what you should or shouldn’t know. Anti-regulation commentators have been quick to pounce on such apparent infringements on liberty in the past (1), and will be quick to suggest that doctors have too much power in deciding what information patients can access.

While it seems easy to put the blame on doctors, even they may not be aware of the incidental findings in your record. In fact, they may prefer not to be told, and there are reasonable arguments to support this type of filtering. The first is that that every genome will produce too much data for a doctor to process without it first being reduced and summarized by computers. More importantly, much of the data is unreliable. Imagine a result that suggests a 30% increased risk of Alzheimer’s Disease based on a published study of 100 Caucasian genomes. Without independent trials and validation it is impossible to know how diagnostic the result is in a larger population or whether it varies based on gender, environment, or racial background. Even if the result is sound, a hypothetical risk has no clinical recourse. In such cases doctors may be justified in setting the results aside as uninformative or even harmful. But if the patient is diagnosed with the disease later in life, the unreleased data may be a legal liability for doctors and data providers. So perhaps, as one line of reasoning goes, it would be best if the result was never created in the first place.

The field of science and technology studies places emphasis on understanding how communities are defined and how representations are made. Representation-making can change the flow of discourse and shift public thinking about new technologies. In the case of medical genomics, representing some mutations as actionable and others as irrelevant characterizes some patients as treatable and others as not. This may also affect whether patients receive basic information about their genome without regard for other non-clinical interests those patients may have. While some data are not clinically actionable to a doctor, they may still be useful to patients based on their perception of disease, their life context, and their individual psychology. Although knowledge of an uncertain Alzheimer’s risk won’t trigger treatment, it may be important in shedding light on family history or prompting health vigilance. As more information is generated by WGS, the practice of throwing away data will be increasingly unworkable. Consumers will become more knowledgeable about their genomes and many will demand better information. Others will step outside traditional institutions and have their genomes analyzed by companies like 23andMe, bringing increased pressure on doctors to keep up with the latest genome reporting services.

Over the past 30 years, medicine has experienced a profound shift from the paternalistic doctor whose decisions were unquestioned toward a health partnership where patients have the confidence to express opinions about their healthcare (2) (3) (4) (5). Continuing that trend means trusting patients with the full breadth of their genetic information (6). Patient and community groups should be involved in the discussions that are currently establishing the guidelines and policies that will govern genomic medicine. For clinical genomics to respect patient autonomy, patients need a voice in how “clinically actionable” or “incidental” are defined. Wider engagement with citizens now can avoid both infringement of rights and compromises in health as genome sequencing enters the clinic.


  1. Huber, Peter. “A Patient’s Right to Know,” Forbes, July 24, 2006.
  2. Coulter, A. “Paternalism or partnership?” BMJ. 1999. 319(7212): 719–720.
  3. Towle, A., and Godolphin, W. “Framework for teaching and learning informed shared decision making.” BMJ. September 18, 1999; 319(7212): 766–771.
  4. Bury, M., and Taylor, D. “Toward a theory of care transition: From medical dominance to managed consumerism.” Social Theory & Health. 2008 6: 201–219.
  5. Elwyn, G., et al. “Shared decision making: A model for clinical practice.” J Gen Intern Med. 2012. 27(10): 1361–1367.
  6. For a good discussion of this issue see: Saha K. and J.B. Hurlbut. 2011. “Treat donors as partners in biobank research.” Nature. 478, 312-313.

Keywords: medical ontologies, autonomy, genomics

Suggested Further Reading: