Nina Hallowell, 4th november 1957 – 28th June 2023: a risk researcher who explored the ways in which genetics touches human lives

Abstract

Nina Hallowell was a medical sociologist, Professor of Social and Ethical Aspects of Genomics at the University of Oxford, and an active member of the editorial board of Health, Risk & Society. In this article I reflect on her contribution to the journal and to the interdisciplinary study of risk especially through her research on the risk of new genetic technologies, both its management and impact on those at-risk.

Keywords:

• Hallowell
• risk
• at-risk
• genetics
• new technologies

Nina Hallowell was an active member of the editorial board of Health, Risk & Society from 2001 to 2023.  Through her research and publications, Nina made a major contribution to the interdisciplinary study of risk especially with her research on the management of the risks of new genetic technologies.

There is a general recognition that interdisciplinary research is an important yet challenging aspect of risk studies.  As  Mildred Blaxter noted, the ESRC funded Risk and Human Behaviour programme did not achieve its desired aim of promoting interdisciplinary research on risk:

It is probably true to say  that the hoped-for collaboration of different disciplines, and particularly the involvement of scientists, ethicists and philosophers, was always unlikely to take place in the programme. (Blaxter, 1999, p. 21)

There are both conceptual and institutional challenges to interdisciplinary research. Disciplines tend to have their own ways of investigating and making sense of the world. The difference is most evident between natural and social sciences. Natural scientists tend to adopt a more positivist, impersonal perspective using experimental methods, looking up telescopes or down microscopes to remove observer bias collecting data to test theories about the nature of the universe. Social scientists may adopt a positivist approach but it is more difficult to bracket out the personal as the data they use is derived from other humans and more explicitly subject to some form of interpretation. This tension between the natural and social sciences is evident in risk studies. For example, in the early 1990s when the Royal Society decided to convene a study group to review current knowledge about risk, it brought together natural and social scientists. Differences in perspectives meant that the group could not agree on a unified report but instead published a report in which four chapters were authored by natural scientists/engineers and two by social scientists (The Royal Society, 1992). As Tom Horlick-Jones, who had co-authored one of the social science chapters wryly commented ‘Four Chapters good, Two Chapters bad’ (in Heyman & Brown, 2013, p. 498). I myself ran into similar problems when I prepared a report with Tom for the ESRC and MRC on future areas for risk research (Alaszewski & Horlick-Jones, 2002). The only comment which MRC representatives made on the draft report was that we should not use collective nouns in the plural, i.e. knowledge not knowledges. This relatively minor grammatical distinction reflected a major difference in perspectives.

During her career, Nina Hallowell was unusual in having built up significant expertise in a variety of disciplines. In an interview with students at the Nuffield Department of Population Health at the University of Oxford she noted how she had been a contract researcher since 1988 who had built up an expertise in biology (an HND she did not complete), psychology, linguistics and psycholinguistics, medical law and ethics and medical sociology (NDPH Student Blog, 2020).

Nina’s interest and commitment to the social sciences was evident in a research methods textbook she co-edited (Hallowell et al., 2005). Both its production and content reflected her style and personality. Usually editors of books define the overall scope of the book and negotiate specific chapter content. This book was produced in a more informal and collaborative way. Nina and her co-editors invited a number of researchers to reflect informally on their research and then drew these reflections into a narrative on the realities of social research, a book of real-life research stories (Hallowell et al., 2005). While contributors’ reflections formed the core of the book, the editors drew out the implications of their stories. Nina modestly underplayed the key role which she and other editors played in this process. Given contributors were invited to bare their souls so others could learn from their experiences, they had to trust and collaborate with the editors. Furthermore the editors allowed the structure of the book to emerge from the contributions and this involved organising and linking the contributions. Nina played a lead role and in the acknowledgements she thanks, among others, ‘all the staff of Favorit in Teviot Place [Edinburgh] who kept her supplied with pieces of cake and cups of good coffee throughout the months she sat there editing, summarising and writing the bits round the edges’ (Hallowell et al., 2005, p. xvi)! The ‘bits round the edges’ formed the backbone of the narrative.

Natural scientists are typically committed to reducing bias by developing and using research instruments which are essentially abstract, that is they are designed to ensure that the observation and data are not dependent on a particular researcher but can be replicated. Hallowell and her colleagues took a very different approach. They created an ethnography of research that foregrounded the key role which researchers played in constructing social science research. The individual chapters used researchers’ stories to explore the ways in which researchers managed emotions, presented themselves, related to other participants in the research, maintained control of the research process, and identified and managed ethical issues. The book did not tell its readers how to do research, rather it drew on the experiences of established researchers: ‘it is a book of research journeys; and we hope you will enjoy reading about these excursions or forays in the world of social science research’ (Hallowell et al., 2005), p. 1)

This book was an exception to Nina’s general publication profile which otherwise focused on journal articles in social science and medical journals. She was interested in editing longer texts. For example in 2015, she offered to edit a special issue for Health, Risk & Society on Risk communication in genomics. Regrettably the proposal never reached fruition. As a researcher dependent of short-term contracts, she did not have the luxury of spending a lot of time in ‘Favorit in Teviot Place’ writing or editing large scale publications. Despite this constraint, Nina did find times to actively engage with journals attending board meetings and reviewing articles. As Jon Gabe noted that when he was editor of the Sociology of Health and Illness, Nina was ‘someone I felt I could rely on to write thoughtful and constructive reviews and to do so on time – always a bonus for editors’ (personal communication).

Most of Nina’s publications have been journal articles which explore the impact of new technologies on individuals and societies. Her initial focus was on genomics, the rapidly developing science and technology of human genetics that enabled individuals to know if they had specific genes that made them more vulnerable to diseases such as cancer. Her interests broadened to include the impact of technologies such as Artificial Intelligence (AI) and Big Data. Her interests were both humanistic, to explore how such technologies could be designed and used to empower individuals and enable them to gain control over their lives and bodies, but also technical, she was keen to understand how the science and technology worked. In an interview with students at the Nuffield Department of Population Health at the University of Oxford, Nina described why she was interested in science and technology:

I have worked on social and ethical implications of genetics and genomics for the last 25 years, I have loved exploring the ways in which genetics touches human lives; how genetics/genomics affects identity and our feelings of connectedness. Since coming to Oxford I have also been working on the ethics of AI and Big Data, and I am fascinated about the ways in which AI is influencing our views of what is human and, more practically, the ways in which it will impact on the delivery of healthcare. Obviously, working in Ethox [the bioethics research centre at Oxford University], my research focus is on the ethics of use of genomic and AI technologies in research and healthcare, but I am really interested in the science and tech too. (NDPH Student Blog, 2020)

Nina was aware that while technologies had the potential to empower individuals they could also be used to disempower. In an article she published in a special issue of Health, Risk & Society on ‘The new genetics: Risks and boundaries’ (Cunningham-Burley & Kerr, 1999), Nina made the case for using information about genetic risk to empower individuals by giving them choices and control over the use of the technology (Hallowell, 1999). In her analysis of data from 46 women who were given genetic counselling for their risk of hereditary breast/ovarian cancer, Nina found that the molecular geneticists providing the counselling were overtly prescriptive (directing women to specific courses of action) and covertly prescriptive (for example, omitting information about some possible actions). She observed that to empower women and give them genuine choice there needed to be voluntariness – absence of pressure to follow the prescribed course of action, and alternativity – the availability of alternative courses of action. She noted that both elements were currently lacking, for example ‘Opting for no further medical intervention is quite simply not an option, even for those at low risk’ (Hallowell, 1999, p. 276). Nina acknowledged that current practice did not empower women and ended her article with a plea for such empowerment (Hallowell, 1999, p. 278).

In the article, Nina also reflected on the wider implication of the growth of surveillance and the increasing number of women ‘at-risk’ of hereditary cancer. She observed that the growth of the risk/disease category blurred the ostensible binary divide between health and illness, therefore changing and expanding the scope of medical practice with an increased focus on risk management (Hallowell, 1999, p. 277).

When Iain Wilkinson (2006) invited Nina to contribute to his special Health, Risk & Society issue on the risk and suffering, she used the opportunity to revisit the data from a study she had undertaken on women’s responses to being at-risk of hereditary cancer. Nina’s starting point was that while risk is about hypothetical futures which may not happen, such futures, once they are conceptualised, have real consequences for people’s emotions and actions in the present so the future can colonise the present. As Nina observed, research on the human genome has identified hereditary risk factors. Recently discovered genetic mutations such as BRCA1/2 increase the risk of ovarian cancer from 1–5 per cent of the general population to between 28 per cent and 60 per cent and may increase the risk of breast cancer to as high as 80 per cent (Hallowell, 2006, p. 12). As Nina noted being at-risk from ovarian cancer had consequences for the lives of the women in her study, 26 of the 49 women in her study had had prophylactic surgery to remove their ovaries and the remainder had regular screening. Genetic technologies are portrayed as having the power to alleviate future suffering (Hallowell, 2006, p. 11) but they can create their own suffering.

Being at-risk of a hereditary disease meant that the women in the study had had other female relatives, in some cases their mothers, who had already died of cancer. Witnessing such deaths made women conscious of their own vulnerability and their probable future suffering:

Witnessing others’ ’pain and distress, coupled with the shock of their death following a relatively short illness, not only brought with it feelings of sadness and helplessness, but also intense fear about their own future health and intimations of their mortality. As Sally said: ‘I don’t want to die. I don’t want to go through what my mother went through. I couldn’t bear it. The illness, the pain, the pain and the agony, for what?’ (Hallowell, 2006, p. 16)

While women in the study were aware that genetic testing could confirm their susceptibility to ovarian cancer, some were ambivalent either because such certainty could destroy their hope for the future or because they saw such certainty was an illusion as the available risk management options created a new set of uncertainties (Hallowell, 2006, p. 17). However a powerful driver for testing and subsequent preventative action was the women’s sense of responsibility to their families, they felt the moral pressure to take action ‘to manage their risk to ensure their children were not left to cope without them’ (Hallowell, 2006, p. 20).

Nina observed that emotions were central to the ways in which women in her study responded to risk. While she anticipated that they would be sad and have a sense of loss, she had not anticipated the fear, anger and frustration that she witnessed:

These women were so angry. Angry at their relatives’ doctors for having ignored their relatives’ pleas for help until it was too late. Angry at having to fight the medical profession in their efforts to get their fears about their family history taken seriously. Angry about the insensitive ways their fears about their risks had been dismissed. Angry about the ways in which prophylactic surgery had been discussed. Angry about the lack of information they had received about the physical and socio-emotional after effects of surgery and fearful of its (potential) impact on their lives. Angry that they had not been told about HRT and fearful of its risks. Angry that their concerns about their children’s risks had been ignored and fearful for their children’s lives. They were very angry and upset. (Hallowell, 2006, p. 11)

Nina drew on established analyses of risk highlighting the ways in which experiences from the past shaped the ways in which the future was perceived and how this impacted on decisions and choices made in the present. However she purposefully did not conceptualise the links in rational, technical terms, for example in numerical or probabilistic terms, rather she saw the relationship as social and emotional and expressed in feelings and suffering: these ‘women’s understanding of risk is framed by their previous experiences of death and dying and perceived as connoting a future of suffering and loss for themselves and others … managing risk in this context may be less an act of rational self-management than the response of an emotional and relational self’ (Hallowell, 2006, p. 9).

In the same article, Nina also wrote about a topic that has remained relatively neglected, the emotional impact of the research on the researcher. She noted the ways in which the women’s emotions and suffering made her feel powerless:

It was clear from the first interview that my project had opened up a can of worms for many of these women and that I had underestimated their desire to talk about death, loss and their existential fears … There was little I could do to help except offer to stop the tape and listen. I felt more and more impotent in the face of their emotions. (Hallowell, 2006, p. 11)

Nina responded to this sense of powerless by seeking to promote the the women’s stories and sense of anger and frustration, ‘I began to talk in public about the research. I talked a lot, to gynaecologists, geneticists, genetic counsellors, nurses, academics and anyone who would listen, and I became angry too (Hallowell, 2006, p. 11). However she also felt there was unfinished business, she felt guilty because she had not been able to deal with the emotion in the original interviews and, reading her transcripts and notes in full: ‘I could not face revisiting the anguish they contained. So for me, this paper is a rather belated attempt at describing what living with the risk of cancer meant to these women’ (Hallowell, 2006, p. 11). When reflecting on her professional life, Nina selected this paper as the one she was most proud of as ‘writing it enabled me to discharge an unspoken debt to my research participants’ (NDPH Student Blog, 2020).

It was a cruel twist of fate that, having at last been rewarded for her work with a post as Professor of Social and Ethical Aspects of Genomics at the Big Data Institute, Ethox Centre Nuffield Department of Population Health, and Wellcome Centre for Ethics and Humanities, Nina was not given enough time to fully exploit the opportunities it provided. She was however able to build on her work in sociology and ethics and expand into a new area, AI and Big Data. In 2022 the Brocher Foundation, which is dedicated to the study of the impact of medical development on society, funded her with study time to work on Artificial Intelligence and healthcare: exceptional technology? (see Fondation Brocher, 2023) and her interests were evident in a series of articles which she authored with colleagues (Hallowell et al., 2022; Sauerbrei et al., 2023).

In her inaugural professorial lecture, Nina reflected on her career as a contract researchers using Hobbes’ famous description of life outside the protection of established authority as ‘solitary, poor, nasty, brutish and short’ (Hallowell, 2022). She noted the ways in which contract researchers did not have the security and protection of academic institutions. She reflected that she had lived on the margins of academia but how this also had given her considerable freedom and that ‘I have done what I wanted to do, when I wanted to do it, pretty much’ (Hallowell, 2022).

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