Science,Technology and Society

Population screening for early-stage cancer or cancer precursors began in the mid-twentieth century, with the goal of reducing suffering from cancer illness and lengthening average life by preventing cancer deaths. Since the establishment of cancer screening, concerns have emerged that it may be doing considerable harm; despite this, screening practices have remained relatively intractable. This intractability in the face of harm is the central problematic of my analysis. I reinterpret a large study of breast, cervical and prostate cancer screening completed recently by our Australian research group, working across empirical bioethics, public health and social science. I suggest three reasons why cancer screening might persist as it does, and thus reach conclusions about what might be required to make cancer screening systems more responsive to the potential for harm.

Prostatic specific antigen (PSA) screening has been controversial since its inception. Controversy has persisted despite more and higher quality clinical evidence. Attention to lead and length time biases, overdiagnosis, overtreatment, medicalisation, iatrogenesis and financial conflict of interest has had limited impact. I undertook a social history of the prostate cancer diagnosis to reassess the causes of controversy and suggest different clinical and policy responses.

For much of the twentieth century, clinicians were uninterested in early detection and radical treatment, believing that cancers revealed after obstruction-relieving surgery or autopsy could be ignored. In 1985, the FDA approved PSA diagnostic tests, which rapidly catalysed two self-reinforcing cycles of action and perception. One occurred when the increased diagnoses made the disease more prevalent and feared, and efforts at prevention and treatment seem more efficacious, leading to more screening, and so on. The other cycle occurred among men with screening detected cancer who initially eschewed radical treatments or imagined doing so, whose lives were often consumed with fear and surveillance, increasing demand for radical cures.

This history underscores the need for novel clinical and policy responses to the looping effects—self-reinforcing cycles of action and perception—which can radically transform so much of what we believe and do about disease.

The tension between providing adequate information and achieving sufficiently high participation in population-based screening programmes, such as mammography, represents an ongoing challenge for health authorities. The theory of nudge illuminates how individuals may be nudged towards healthy behaviours without restricting individual freedom of choice. We analyse information provided on health authority webpages and uncover the subject positions available to healthy women deciding whether to participate in screening. We do so by comparing different policy contexts where women must opt in to screening (Australia) or opt out (Scandinavia).

We conclude that information is used to nudge women towards screening. Alongside focus on the ease of being screened, tensions exist in simultaneously portraying women as being at risk of breast cancer and providing reassurance of their healthy state. We identify persuasive devices that emphasise responsibility to participate in screening and conclude that webpages play a dynamic role in authorities’ attempts to, on one hand, achieve high participation in screening, and on the other, promote mammography screening as an individual choice.

Non-invasive prenatal testing (NIPT) is a genomic technology used to predict the chance of a foetus having a genetic condition. Despite the immediacy of this technology’s integration into clinical practice, there is a dearth of evidence outlining how both patients and professionals experience NIPT on the ground. In this article, we draw upon our collective empirical research—specifically on earlier screening technologies (BKR), Down syndrome screening (GT), genetic screening/testing (JL) and NIPT (HS)—to outline the most pressing and often controversial issues which, we argue, remain unresolved and vital to consider regarding NIPT. We begin with a brief introduction to NIPT as a prenatal technology and the bodies of literature which unpack its ‘social life’. In what follows, BKR discusses NIPT within the context of her research on ‘the tentative pregnancy’ and diagnostic testing in the USA. In the following sections, GT, HS and JL identify different, but related, concerns with respect to NIPT, particularly around routinisation, commercialisation, choice, abortion, and configurations of disability and ‘normalcy’.

Newborn screening (NBS) for inborn errors of metabolism and other serious conditions with onset during infancy is a widespread public health initiative. Like other screening programmes, it aims to discover and treat a disease before effects manifest themselves. Recently, there have been two prominent changes in NBS: a substantial increase in the number of conditions screened for and growing attention to secondary use of residual newborn blood spots. Here, we analyse how this latter change has transpired in Norway.

In 2018, Norway’s parliament sanctioned the secondary use of NBS samples for epidemiological research unrelated to NBS. This broadened the programme’s scope, co-opting it for research purposes, making samples available for inclusion in Norway’s biobanking strategy. We argue that this transformation is a case of function creep, whereby the function of screening samples is expanded to serve purposes other than helping newborns. The process provided only minimal involvement from ordinary citizens, but it transformed screened infants into potential scientific citizens. Henceforth, all future generations of Norwegians must choose to stay in or opt out of biobank research when they turn sixteen. Additionally, consenting to this research may occasion a second form of function creep, as ‘actionable findings’ are fed back to participants.

States that claim responsibility for citizens’ healthcare try to deal with knowledge uncertainties while preserving a duty of care. Production of clinical guidelines in disputed medical conditions or where uncertainty is high, is difficult. Patient groups may advocate non-credentialed evidence, contribute to debates and form alliances with established policy actors. In this context, Lyme disease, especially highly contested ‘chronic’ Lyme disease is a good case with which to examine how official governance institutions are managing diagnostic uncertainty and evidence for tests. The healthcare state has been provoked to develop extensive policy for Lyme disease. In the UK, national Health Technology Assessment agency, NICE, began a consultation process in 2016. NICE and other policy actors are moving towards more participatory modes of decision-making. The article analyses NICE’s recently published guidelines and consultation documents; patient groups’ contributions; observations of consultations and of evidence review processes; and recent Department of Health systematic reviews, including patient group participation. We draw on concepts of participatory governance, patient group activism and guideline involvement. We find an increased level of participation by patient groups in recent policy and evidence review processes, and hence legitimation of them as ‘stakeholders’, alongside a strengthened state position on pre-existing diagnostic and testing standards.

Kiran Pienaar (KP) and Alan Petersen (AP): Thank you, Annemarie, for agreeing to share your perspectives in this interview. We are delighted to have this opportunity to engage with your insights and scholarly contributions on the sociology of diagnosis.

In 2011 you co-edited a special issue of Social Science and Medicine entitled ‘Toward a Sociology of Diagnosis’ in which you called for sociologists to pay more attention to medical diagnosis as a central practice and classification tool of medicine. In the introduction, you note that ‘diagnosis has had an absent presence in the sociology of health and illness’ (Jutel & Nettleton, 2011, p. 793). Do you think this is still the case or has the field developed since then to attend more closely to the social issues and processes at work in diagnosis? In your view, does diagnosis merit continued/renewed sociological attention? And if so, why?

Alan Petersen (AP) and Kiran Pienaar (KP): Thank you, David, for agreeing to share your perspectives in this interview. It is a pleasure and honour to have this opportunity to engage with your insights and scholarly contributions on surveillance medicine and the sociology of diagnosis. Looking back to your early contributions on surveillance medicine, these seem to anticipate recent diagnostic trends. What, if anything, has changed in the interim period?

Biobanks are a growing phenomenon in global biomedicine, as they are key tools of precision medicine initiatives. National biobanks, however, collect data and biological material from populations in specific regions, and the knowledge that national biobanks yield can impact understandings of identity, origins and belonging. Drawing on ethnographic work and documentary analysis examining the Israeli and Qatari national biobanks, I find that these two Middle Eastern biobanks aim to contribute to global biobanking trends, while at the same time, they reinforce local ethnic and national identities. The Israeli biobank reflects pre-existing ethnic identities in Israeli society, while the Qatari biobank predominantly emphasises the emergent national character of the Qatari population. Neither of the biobanks assert a high genetic homogeneity of the national population; rather, they both emphasise a genetically diverse national cohort that is a valuable resource for biomedical research. Through a comparative analysis of global biobanking and ethnic identities, this article demonstrates that biobanks are a rich site for tracking emergent national identities in the Middle East region.

Ana Delgado (Ed.) (2016), Technoscience and Citizenship: Ethics and Governance in the Digital Society. Switzerland: Springer, 189 pp., ₹9,039, ISBN: 9783319324128 (Hardcover).

Lilly Irani (2019), Chasing Innovation: Making Entrepreneurial Citizens in Modern India. Princeton, NJ: Princeton University Press, 304 pp., 10 b/w illustrations, $29.95 (Paperback), ISBN: 9780691175140; $99.95 (Hardcover), ISBN: 9780691175133.