My DNA and I: Genetic imaginaries of DTC (direct to consumer)
Private companies, especially start-ups, have shown an increasing interest in genetic susceptibility tests. In the last ten years, many personal genomics companies started to sell their tests as revolutionary ways to empower patients, democratize biomedical research, and personalize healthcare through direct access to personal genomic data (Prainsack 2021). DTC tests offered by these companies include predispositions to common diseases (e.g. prostate cancer, stomach cancer, male infertility, AD, VTE, and so forth); “pharmaco-genomic” information concerning the risk of collateral effects of certain pharmaceutical molecules (the pill), or their dosage (anticoagulants); hereditary recessive mutations (causing hemochromatosis, muscular dystrophy and so forth) which can be present in healthy carriers; and, finally, factors determining physical traits (eye or hair color, hair type, chest size), intolerance to certain foods (gluten, lactose, alcohol) and predisposition to certain physical activities (marathoner or sprinter). They are also used to trace ancestry. DTC genetics opponents, including health care regulators, policy advisors, clinicians and scientists, have highlighted important drawbacks and dangers in spreading this sort of genomic information without the supervision of experts (Turrini 2018). Yet, online personal genomics keeps being a lively, although small, niche industry, with new companies popping out in many countries outside of the US.
This project will analyze how the genetic imaginaries, and devices, that DTC testing mobilize are circulating outside of the US. The anxieties about the unregulated nature of this industry have not curtailed the growth or the rise of this sector and in some cases the public funding and support in many countries. In Spain, DTC genetic testing firms emerged a few years ago and now they are flourishing. Many start-ups, such like 24Genetics, TellmeGen, ADNtro, were founded with the only mission to provide DTC genetic testing. At the same time, many molecular laboratories working within health care started to offer a DTC service to single costumers. This project intends to analyze DTC genetic testing as a way to construct the cultural and economic values of DNA in an emerging bioeconomic sector (Geiger and Gross 2021). In order to do it, we analyze the representations of DNA surrounding public debate of DTC in the press, political and juridical institutions, as well as in company websites and entrepreneurial discourse.
While focusing on Spain, we compare it with two other national contexts: India and France. In the Indian subcontinent, DTC personal genomics has become a source of contention for the Indian Council of Medical Research (ICMR), suggesting that private take-home DNA tests are ‘exploiting’ people. Yet, some states keep funding and support for experimental genetic tests in identified multispecialty hospitals and specialized clinics. In particular, the study will focus on the Indian state of Telangana, which hosts multiple global and local DTC companies like, MapMyGenome, GeneTech and Bione; and quasi-public specialized hospitals such LV Pai Eye Hospital in Hyderabad city, which have received state support to pursue gene mapping of particular congenital conditions. In contrast, France is one of the few countries where this activity is banned, even if this prohibition keeps stirring up an intense public debate, especially during the recent discussion of the law on bioethics (l. n. 2021-1017). By analyzing the commercial initiatives and the public controversies that surround them in these three national contexts, this project can shed light on the ethical, legal, and social implications of this emerging bioeconomic field.
References
Geiger, Susi, y Nicole Gross. 2021. « A Tidal Wave of Inevitable Data? Assetization in the Consumer Genomics Testing Industry ». Business and Society 60 (3): 614‑49. https://doi.org/10.1177/0007650319826307.
Prainsack, Barbara. 2011. « Voting with their mice: personal genome testing and the “participatory turn” in disease research ». Accountability in Research 18 (3): 132‑47. https://doi.org/10.1080/08989621.2011.575032.
Turrini, Mauro. 2018. « Online Genomes: Problematizing the disruptiveness of direct-to-consumer genetic tests ». Sociology Compass, e12633. https://doi.org/10.1111/soc4.12633.