21 December 2015

US Genetic Discrimination and Objectivity

'How Genetics Might Affect Real Property Rights' by Mark and Laura Rothstein in (2016) 44(1) Journal of Law, Medicine and Ethics comments
New developments in genetics could affect a variety of real property rights. Mortgage lenders, mortgage insurers, real estate sellers, senior living centers, retirement communities, or other parties in residential real estate transactions begin requiring predictive genetic information as part of the application process. One likely use would be by retirement communities to learn an individual’s genetic risk for Alzheimer’s disease. The federal Fair Housing Act prohibits discrimination based on disability, but it is not clear that it would apply to genetic risk assessments. Only California law explicitly applies to this situation and there have been no reported cases.
'The Emperor’s New Genes: Science, Public Policy, and the Allure of Objectivity' by Ruha Benjamin in (2015) 661 Annals of the American Academy of Political and Social Science 131-142 addresses
the politics of genomics through three diagnoses: The first, diagnosing objectivity, discusses how researchers involved in a large-scale population mapping initiative distinguish genomics as relatively objective, compared to other forms of knowledge production. The second case, diagnosing nationality, examines an attempt by the UK Border Agency to use genetic ancestry testing to vet asylum claims. The third case, diagnosing indigeneity, considers how indigenous councils in southern Africa engage genomic science in their struggle for state recognition and rights. I argue that genomics’ allure of objectivity lends itself to such diagnostic attempts among both powerful and subaltern social actors and suggest that developing “technologies of humility” may provide one safeguard against the increasing uptake of genomics as the authority on human difference.
 Benjamin comments
The specter of state-sanctioned eugenics can serve as a distraction from more routine, seemingly benign or even beneficent, scientific practices that are taken up in the policy arena. When attention is focused too narrowly on eugenic boogiemen, genomic saviors that seem to tell us a more true and complex story of population history, may elude critical analysis. A moratorium on the binary between good versus bad science as a mode of popular and scholarly critique is necessary, because the distinction sidesteps how much of what we deem as “bad” today was produced by respected researchers based in prominent institutions of the time. The normative distinction causes observers and analysts alike to be wary of practices that appear obviously bad and are often sensationalized (e.g., Tuskegee syphilis experiment), while overlooking normal workaday science produced with the help of multi-million-dollar grants by award-winning researchers vetted through peer-review. Although the critical response by the population genetics community towards A Troublesome Inheritance (2014a) by Nicholas Wade was celebrated by many who have been calling for greater reflexivity in the field, it underscores this binary: a letter signed by more than 130 researchers said that Wade had “misappropriated” their research to “support arguments about human societies” as it relates to IQ, political institutions, and economic development.  Certainly, misuse is an issue, but what also seems to fuel the uptake of genomics in support of such claims is the field’s allure of objectivity.
The hazards of workaday genomics, I suggest, have more to do with this allure than with its potential to construct hierarchies of superior and inferior groups. In this context, focusing on proponents of biological determinism a la Wade may serve as a distraction from the dexterity of genomics, in which different social actors draw on its diagnostic allure to make authoritative claims about group boundaries.
In framing this discussion as a set of interconnected processes of diagnosis, I draw on work that challenges the use of genetic ancestry testing as a diagnostic of group membership. For example, Bolnick et al.’s (2007) caution that
when an allele or haplotype is most common in one population, companies often assume it to be diagnostic of that population. This can be problematic because high genetic diversity exists within populations and gene flow occurs between populations. Very few alleles are therefore diagnostic of membership in a specific population, but companies sometimes fail to mention that an allele could have been inherited from a population in which it is less common. (p. 400, emphasis added)
While the critique above is directed at the private sphere (i.e., companies that capitalize on the willingness of consumers to pay for testing), the discussion here is concerned with how such tests are taken up in public policy where the parameters of political and social inclusion are being established or challenged. In the process of diagnosing group membership, genomic tools are deployed by varied social actors to make competing claims about who belongs and who does not. Extending Pollock’s (2012) application of the Derridean concept of pharmakon to race-based medicine—as both remedy and poison—the discussion here illustrates the normative dexterity of genomic claims in public policy (Benjamin 2015). It draws three examples together through the idiom of diagnosis, to con-ceptualize the connection between the authoritative representation of the field and its political circulation. The first case, diagnosing objectivity, discusses how representations of a large-scale population mapping initiative distinguish the objectivity of genomics from other forms of knowledge production. The second case, diagnosing nationality, examines an attempt by the UK Border Agency to use genetic ancestry testing to vet asylum claims. The third case, diagnosing indigeneity, considers how indigenous councils in southern Africa engage genomic science in their struggle for state recognition and rights. I argue that the field’s allure of objectivity lends itself to such diagnostic attempts by powerful and subaltern social actors alike. Finally, I suggest that developing “technologies of humility” (Jasanoff 2007) may provide one safeguard against the increasing uptake of genomics as a means to arbitrate the parameters of political and social inclusion.
In discussing the 'diagnosis of nationality' [p 134] Benjamin states
In 2009, the UK Border Agency (UKBA) initiated the Human Provenance Pilot Project (HPPP), with the aim of using genetic ancestry testing and isotope analysis to vet asylum claims. If, over the course of a standard interview, caseworkers grew suspicious of an applicant’s story, they would request samples of saliva, nails, and hair. The primary targets of the project were East Africans. Somali applicants escaping persecution were eligible for asylum, so if the tests indicated someone was from Kenya—a phenomenon dubbed “nationality swapping”—he or she was scheduled for deportation. The entire process was essentially an experiment. Yet over the course of the project, actual cases were vetted using these methods. A letter from the deputy director of the project, Phil Douglas, stated that “all samples will be provided voluntarily,” but caseworkers were encouraged to regard refusal to submit samples with suspicion. The official protocol instructed:
If an asylum applicant refused to provide samples for the isotope analysis and DNA testing the case owner could draw a negative inference as to the applicant’s credibility. … There must be other compelling evidence which also clearly demonstrates that the applicant has attempted to conceal information or mislead the UK Border Agency. It must not be stated within the RFRL [Reasons for Refusal Letter] in isolation and must certainly not be stated as a primary reason for refusing the applicant’s asylum claim.
Following the protests of refugee advocates and the work of journalist John Travis—and not through any regulatory or oversight governing body—the project came under widespread scrutiny. In the process, academic scientists expressed shock and disgust, insisting that the techniques used could not diagnose nationality in the way that the project assumed. David Balding, a population geneticist at Imperial College London, noted that “genes don’t respect national borders, as many legitimate citizens are migrants or direct descendants of migrants, and many national borders split ethnic groups” (Travis 2009).
Mark Thomas, a geneticist of University College London, who called the HPPP “horrifying,” contended that determining a person’s ancestry—as distinct from nationality—is more problematic than many believe. “[Mitochondrial] DNA will never have the resolution to specify a country of origin. Many DNA ancestry testing companies have sprung up over the last 10 years, often based on mtDNA, but what they are selling is little better than genetic astrology,” he said. “Dense genomic SNP data does have some resolution … but not at a very local scale, and with considerable errors” (Travis 2009). Likewise, Alec Jeffries, one of the pioneers of human DNA fingerprinting, wrote,
The Borders Agency is clearly making huge and unwarranted assumptions about population structure in Africa; the extensive research needed to determine population structure and the ability or otherwise of DNA to pinpoint ethnic origin in this region simply has not been done. Even if it did work (which I doubt), assigning a person to a population does not establish nationality—people move! The whole proposal is naive and scientifically flawed. (Travis 2009)
An isotope specialist at Durham University, Janet Montgomery, explained that “unless the border between Somalia and Kenya represented some major geological or hydrological division, I cannot see how isotopes will discriminate between people living there let alone living at/on the border” (Silverstein 2011). Montgomery specified, “Isotopes do not respect national borders or convey some inherent national attribute. They are not passports” (Silverstein 2011).
Despite such severe criticism from the scientific community, the HPPP did not initially shut down; nor did it rule out the possibility that it would reintroduce a similar initiative in the future. In their own defense, representatives of the Border Agency insisted that only asylum-seekers who had already failed linguistic tests (another contested method of determining nationality) would be asked to provide mouth swabs, hair, and nail samples. It also released the following written response to scientific criticisms:
Ancestral DNA testing will not be used alone but will combine with language analysis, investigative interviewing techniques and other recognized forensic disciplines. The results of the combination of these procedures may indicate a person’s possible origin and enable the UKBA to make further enquiries leading to the return of those intending on abusing the U.K.’s asylum system. This project is working with a number of leading scientists in this field who have studied differences in the genetic backgrounds of various population groups. (Travis 2009, emphasis added)
Several prominent scientists, who had been interviewed by Travis, said they suspected that private labs that were under much less regulatory oversight had been involved in the project. And while the UKBA has since tried to downplay the significance of the project, in the words of Pearson, “It’s peoples’ lives we’re dealing with.”
The idea that the HPPP was voluntary conceals the threat of deportation if applicants did not consent to testing. It is coercive to say one has a choice, when one of those choices is automatically penalized. As Tutton, Hauskeller, and Sturdy (2014) explain, “In the UK, official and popular attitudes to those who request sanctuary have become dominated by a hermeneutic of suspicion. Public and policy discourses portray asylum seekers as mostly ‘bogus’ refugees seeking admission to the country for economic, not humanitarian, reasons” (p. 739).
The quest for scientific tools to determine ancestry and arbitrate group mem-bership continues apace toward a variety of political and biomedical ends. The near uniform criticism on the part of scientists toward the UK project serves to highlight a key feature of the underlying science—its refusal to adhere to “terms of use” in so far as the UKBA was unwilling to completely shut down the project. Furthermore, essential for this discussion is that
such technologies of identity do not simply offer more objective means of confirming or disconfirming conventional identity claims. They actually redefine the social categories of identity on which immigration and asylum decisions are based. … The HPPP stands as a salutary warning of the ways in which supposedly objective technologies of identifi-cation are increasingly being used at international borders as a way of further disempow-ering the already vulnerable. (Tutton, Hauskeller, and Sturdy 2014, 749)
But due to the dexterity of the field, supporting as it does competing ideas about peoplehood and belonging, it has also been enrolled in initiatives that seek to empower groups that have been historically dispossessed, as the next section illustrates. The latter, as I argue, should attract as much careful analysis as the HPPP, because of the way that the authority of genomics may displace other forms of group-making and political mobilization.