The Trustworthiness Deficit in Postgenomic Research on Human Intelligence
Total Page：16
File Type：pdf, Size：1020Kb
The Trustworthiness Deficit in Postgenomic Research on Human Intelligence BY SARAH S. RICHARDSON wkward.” “Troublesome.” “Charged.” I use the nascent term “postgenomics” here to refer A queasy lexicon pervades discussions of re- to the period since the completion of the major genome A search on the genomics of intellectual ability. sequencing projects in 2001. In the postgenomic era Science writer Nicholas Wade invoked this trope of un- genomics has become a foundational platform in most ease in his 2014 book A Troublesome Inheritance, which areas of life sciences research, proliferating the methods argued that postgenomic science shows that, contrary to and applications of genomic science. Postgenomics is previous consensus, racial, ethnic, and national differenc- characterized by deep contestations about what questions es in social behavior have a genetic origin.1 Wade claims can and cannot be answered using DNA sequence data. that the full implications of this new science have been In Postgenomics: Perspectives on Biology after the Genome, avoided by social scientists and geneticists, for whom it Hallam Stevens and I argue that the conditions of scien- uncomfortably challenges cherished ideas of social equal- tific knowledge production in genomics are destabiliz- ity. The first postgenomic dust-up over IQ and genomics ing shared understandings of what counts as scientific occurred in 2005 when University of Chicago geneticist knowledge in this arena. As genomics methodologies Bruce Lahn claimed that genes for large brain size were become ubiquitous, there is a renewed need for articula- more common among Europeans and Asians than in tion of community standards for research. Yet there is a African populations. Lahn implied that this was related dearth of venues for sustained conversations that might to the cultural achievements of non-African populations. lead to the establishment of scientific community stan- Analyzing the fall-out from this episode in a 2011 article, dards for research in transdisciplinary genomics research I argued that Lahn’s claim (now debunked) would not be endeavors.4 the last of this sort.2 The Lahn episode put all of the ethical and epistemic Though rebuked by scholars of race and genetics, challenges of the postgenomic moment on full display. Wade’s 2014 book has found a wide audience, sound- Researchers professed the importance of academic free- ing another warning of an older accord coming undone.3 dom, condemned racism, and managed media contro- In the past work on racial and ethnic variation in brain versy simultaneously to try to ameliorate harms. These and behavior was marginalized within genetics. Against approaches focused on the interpretation of the studies’ the backdrop of genetics’ eugenic legacy, wide consensus results, failing to recognize and raise fundamental ques- held such research to be both ethically problematic and tions about changing standards for making claims in the methodologically controversial. But today it is finding postgenomic sciences of human differences in cognition new opportunistic venues in a global, transdisciplinary, and behavior. As such, they revealed worrying deficits data-rich postgenomic research environment in which in the fields’ ability to govern and negotiate standards such a consensus is increasingly strained. for making postgenomic claims in the transdisciplinary space between human population variation research, studies of intelligence, neuroscience, and evolutionary Sarah S. Richardson, “The Trustworthiness Deficit in Postgenomic biology. Research on Human Intelligence,” The Genetics of Intelligence: Ethics and the Conduct of Trustworthy Research, special report, Hastings Center Report Today, researchers at BGI Shenzhen (formerly Beijing 45, no. 5 (2015): S15-S20. DOI: 10.1002/hast.493 Genomics Institute) in China, in collaboration with lead- SPECIAL REPORT: The Genetics of Intelligence: Ethics and the Conduct of Trustworthy Research S15 ing behavior geneticist Robert Plomin and with prominent not just to those of us with certain forms of privilege, figures such as Steven Pinker in advisory roles, are pursu- who see the world through certain lenses, from certain ing the genomics of intelligence on a newly grand scale.5 biased perspectives.8 They are sequencing large numbers of whole genomes of From this perspective, the trustworthiness of the results people considered highly intelligent (by varying empirical of basic science is—and should be—entangled with the and social measures) in the hope of finding gene variants trustworthiness of the social processes that produce, dis- predictive of intelligence. Troubling and at times outland- seminate, and use those results. Trustworthiness offers a ish futurist claims accompany this research. Scientists in- valuable framework for thinking through the mangle of volved in this research have openly discussed the possibility ethical and epistemic considerations provoked by proposals of marketing prenatal tests for intelligence, of genetic en- to research the genomics of individuals identified as highly gineering or selective embryo implantation to increase the intelligent. likelihood of a high-IQ child, and of genotyping children If we begin to probe the researchers’ request for access to to guide their education.6 In this permissive and contested CTY’s data, some troubling opacities emerge. For example, environment, what would trustworthy research on the ge- when asked by CTY, the researchers said they were not in- nomics of high intelligence look like? terested in racial or group differences in intelligence. They In the fall of 2014, The Hastings Center and the Johns also promised to donate ten dollars to a scholarship fund Hopkins Center for Talented Youth (CTY) gathered a for minority students for each participant who agreed to diverse group of experts to discuss a request by research- send a cheek swab to the study. However, it was known that ers seeking to study genetic markers associated with high the eligible study group within the Study of Exceptional intellectual functioning. The researchers sought access to Talent is 70 percent male and 94 percent of white or Asian test score data and contact information for participants ancestry. This skew in the data set could affect data inter- in a long-running CTY study known as the Study of pretation and the scope of the findings due to sex- and Exceptional Talent. As of May 2015, the study included population-based variation in genomic architecture. How almost 5,500 eligible eighteen-and-over individuals iden- would the researchers address this issue in the design, inter- tified over many decades of work at the highly regarded pretation, and communication of the results of the study? CTY as a part of their ongoing research on the trajectories As another example, the researchers revealed no com- of people who were identified as highly talented children.7 mercial interests. However, the research team has proposed The main question before CTY was whether it should that genetic testing could be used in schools to individu- make its data available to these researchers. One view was ally tailor educational programming that would involve the that it should, as long as the researchers were proposing marketing of “gene chips” to school systems. One of the methodologically sound science that would be subjected researchers is a principal in the BGI Cognitive Genomics to peer review before publication. The problem with this project, a for-profit enterprise with open ambitions of mar- view is that, in the case of genomic research on human keting genetic tests for intelligence. The exact role of BGI intelligence, we lack a trustworthy way to determine that in the study was not clarified, although researchers said this is the case. that the genome sequencing itself would not occur at BGI. All but a few privileged actors are necessarily dependent Would the CTY data be pooled with data supporting the on—and therefore must trust—the investigators leading any controversial BGI Cognitive Genomics project? Did the particular scientific endeavor because they lack the knowl- researchers envision commercial applications utilizing the edge or access to check their claims. “Trustworthiness” is CTY participants’ genomic data? What checks would the an epistemic-ethical feature of scientific work that allows us researchers put in place to reduce potential biases intro- to rely on its findings even when we cannot witness them duced by their own intellectual, institutional, and possible or do not have the tools to independently audit them. We financial investments and interests? find scientific projects “trustworthy” when we have good I invite the reader to take the standpoint of communities reasons to believe that they in fact do what they say they most historically open to harm from this kind of research: are going to do. As philosopher of science Naomi Scheman poor African American communities—one of which, it has influentially argued, should be noted, surrounds CTY and Johns Hopkins in The trustworthiness of scientific methods derives, in Baltimore, Maryland. There are well-motivated reasons practice, from the effective working of those institu- for this community to perceive genomic research on high- tional structures; and justified belief in that trustworthi- intelligence individuals as lacking trustworthiness. These ness arises from the justified belief that those institutions reasons are documented in Aaron Panofsky’s recent book do in practice what they are supposed to