Interview with Gareth M. Thomas on Down Syndrome screening & reproductive politics

Below is an interview with Gareth M. Thomas, a sociologist at Cardiff University, UK. He is the author of a new book, Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic. 

Please note throughout the interview DS refers to ‘Down Syndrome,’ also known as ‘Down’s Syndrome’ in some countries.

Tell me a little bit about your academic background, your research interests, and where you are currently located.

 

Sure. In 2006, I began an undergraduate degree in sociology at Cardiff University based in the UK, Wales specifically. I really liked my degree but had no concrete plans for after I graduate. After being convinced by my brilliant supervisor at Cardiff, Finn Bowring, I decided to apply for a Master’s program. It was not really on my radar until he persuaded me to apply. Over the four years of my studies, I became very interested in issues of health, medicine, disability, and stigma. For my undergraduate dissertation, I explored how stigma infiltrated, or not, the lives of parents who have a child with Down’s syndrome (DS). For my Master’s thesis, I examined how mothers of children with DS reacted to a prenatal or postnatal diagnosis and how they subsequently constructed an understanding of self in light of this situation.

After more conversations with Finn, I decided to continue this work by undertaking a PhD in sociology, once again at Cardiff, on prenatal screening for DS. This started in October 2010 and finished in June 2014. I also began a Research Associate position at Cardiff in February 2014, which was just before I handed in my PhD thesis. It was on a completely unrelated topic actually – a collaborative qualitative study with young people based in a post-industrial town on issues of health, stigma, and regulation – but I appreciated the break from my PhD. In June 2015, I was appointed as a Lecturer in Sociology at Cardiff. Can you tell that I like it here?! I do love the job. It provides me with, among other things, a chance to further explore my major interests, which currently concern disability, stigma, pregnancy, and healthcare interactions.

For people who are unfamiliar with of ethnographic research, what is unique about it and why did you use this approach for a qualitative study on this subject? That is, what are its advantages and disadvantages for understanding meanings and social behavior?

The particulars of ethnographic research are long-debated. But more generally, this approach involves studying – usually over a protracted period of time – the social interactions, behaviors, and perceptions that occur in people, groups, organizations, communities, and so on. Its main aim, for the most part, is to provide a ‘rich’ insight into the life of people located in a particular setting via detailed observations (although I believe that other methods, including interviews and document analysis, make up the entire ethnographic process). So for the purpose of this interview, I will work from this very broad definition and ask for some forbearance. Otherwise, we would be here all day!

Before the PhD, I read around the topic and found that there is already a substantial literature on the experiences of expectant parents in relation to DS screening. But much of this research relies on interview data, that is, it is based on retrospective accounts of expectant parents and, rarely, professionals too. So I wanted to observe what was happening on the ground with those at the frontline of DS screening. I was mostly guided by an interest in producing an in-depth description of the prenatal clinic and the working lives of the people within it. By staying glued to the professionals throughout my research, I was able to see how DS screening was ‘done’ in everyday interactions and practices. This allowed me to open up what I have referred to as the clinic’s public ‘frontstage’, such as the consultations with expectant parents, and its private ‘backstage’, such as offices and the interactions between professionals as well. This was vital for me because most research on DS screening limits itself to consultations alone. Of course this is important as it is where DS screening is talked about, but what I wanted to do was show how the consultation is only one part of DS screening and that there was much more going on in hospitals that merits attention.

For me, observations were the best method for doing this. Throughout the study, I was invited by professionals to escort them around the clinic and into consultations, offices, meetings, and so on. Actually, that said, I did spend a lot of my time simply hanging out with professionals and this was really valuable for collecting my data. So for me, observations were an appropriate method for exploring the everyday practices and interactions of professionals with respect to DS screening. I did not want to ‘assess’ or ‘evaluate’ professionals but, really, I just wanted to understand the practice of DS screening – including how it was done and the professionals’ views on the practice – at the hospitals. I was also able to crosscheck observations with some interviews that I carried out with professionals. That said, observations were my key method of enquiry. By being there for the best part of a year, I was able to shape my own understanding of how this procedure has become so routinized in prenatal care.

In my own view, the main criticisms of observations are that findings are rarely generalizable and that the final product is only one ‘interpretation’ of events. My response to the first charge would be that whilst I recognize that it is difficult discuss situations for a universal professional service on the basis of a single study, I never intended for my research to accurately represent all hospitals. But it answers broad universal questions about the place of DS in many different prenatal screening programs, so it may well have applicability in other settings. I just have to leave it to others to test my observations against their own and hope that they translate! My response to the second charge – that ethnographies are based exclusively on an interpretation and are not objectively described – is that I am aware that my book is an impressionistic sketch that contains my own interpretations. But I would say that this happens an awful lot, especially when working with qualitative data. Interviews are interpretations as well; an interviewee talks and we ordinarily create a transcript, but we still make interpretations about what they have told us. So for me, the idea that observations are only an interpretation, and we need something more ‘objective’, does not stand up. I would also cite my description, in the book’s preface, of ethnography as ‘good storytelling’. I hope that the book contains a tale that others perceive as interesting, credible, and – related to the points made here – translatable to other places.

What interested you in looking at Down’s syndrome screening specifically rather than diagnosis?

 

My initial interest in this topic stemmed from growing up with Brittany, a now twenty-seven-year-old woman who has DS. Brittany is part of a family – Lynne (Mum), Chris (Dad), and Lauren (sister) – who lived a few doors down from us during my childhood. We were (and still are) very close and this personal relationship was transformed into a more substantial academic interest during my undergraduate and postgraduate years. I felt that since I had done my Master’s thesis on how parents manage a prenatal or postnatal diagnosis of DS, I wanted to focus my attention elsewhere. After reading recent work on DS screening, I felt that it was an interesting and important research area, and that I could maybe contribute something new to the debate. It also felt like a natural progression. For my undergraduate dissertation, I studied how parents negotiate stigma during childhood and adolescence. For my Master’s thesis, I explored how mothers react to a diagnosis of DS either before or at the moment of birth. I went from childhood and adolescence to the moment of diagnosis, and so I thought that it made sense for my PhD to go one step further back by examining how DS interacts with early pregnancy. 

During the study, I did consider focusing more substantially on the process of diagnosis too. But I avoided this for a few different reasons. One was that it was practically difficult. I was at two hospitals and, as such, the number of possible parents being told about a diagnosis of DS would have been minimal. I would also question whether my presence within such a deeply personal, ethical moment would have been suitable. These concerns may have been addressed by talking to parents of children with DS about their experiences of diagnosis – perhaps a few years after receiving this news. But I had gathered some data on this for my Master’s degree, which I have published elsewhere. So my focus was primarily on the screening process rather than the diagnosis process.

Your study takes place at two prenatal clinics in the UK and focuses on the professionals involved in screening including physicians, midwives, sonographers, technicians, maternity care assistants, nurses, etc. Did you notice differences in the way these professionals defined and framed screening for Down’s syndrome by position? Did you see differences based on their proximity to the actual hands-on work of screening?

 

Actually, in the hospitals I observed, DS screening consultations were carried out pretty much exclusively by midwives or sonographers. As such, they were the ones who mostly defined and framed it in the clinics. In the book, I talk about this as ‘downgrading’, namely how physicians were able to ‘relegate’ screening down the clinical hierarchy. Since DS screening was viewed as a routine and ‘easy’ test for many reasons as I explain in the book (particularly in chapters three and four), responsibility for its delivery was allocated to midwives and sonographers.

There were very few differences between how midwives and sonographers defined and framed screening for patients. Both followed a very similar script, but I did observe small differences with respect to the method of screening. In one hospital, DS screening was performed through withdrawing blood from a pregnant woman. In the other hospital, it was carried out via a blood test and an ultrasound scan. In chapter four, I discuss how the use of ultrasound results in DS screening often being framed as a ‘day out’ where parents observe their baby and where family members are invited to join the festivities. Whilst this did change interactions in comparison to the other hospital, the information provided about DS screening and the fetus was similar in both settings.

In the book, I discuss the effects of midwives and sonographers carrying out most of the work around DS screening. Many of them actually did not perceive DS screening in a positive way. Their concerns were related to the technology itself – such as it being relatively inaccurate, it opening a can of worms (using their own words), and it possibly being perceived as a ‘eugenic’ practice – but also to consultations being seen as boring and as ill-suited for their professional role. In chapter five, I also identify one major effect of this ‘relegation’ of screening is that DS is not discussed a great deal. This is because DS is viewed as familiar to parents (so there is no need to talk about it explicitly), it is not seen as important enough for discussion in a time-restricted consultation, and some professionals feel ill-prepared to discuss it. The latter point reflects the claim from some professionals that they had received little-to-no training and/or information on DS, even if they felt confident to discuss the screening process. So whilst the midwives and sonographers were responsible for the hands-on work of screening, they – and I – identified several issues with this.

In the introduction you say your book is ‘a story of both extraordinary drama and ordinary routine.’ Do you mind giving examples of both that you observed during your research?

I guess that it is quite hard to separate the two as, for me anyway, the ordinary routines are the extraordinary dramas! What I was trying to get across here was that if we look at the mundane, micro stuff that goes on in the hospital, which may otherwise get overlooked as being ‘normal’ or as taken-for-granted, it can tell us some really interesting things about how and why we are so invested in DS screening, how it persists as a widespread medical program, and the impact of this for expectant parents and the professionals offering this service.

A single example of an ‘ordinary routine’ would be observing exactly who carried out screening consultations, in what location, and what language was used during this exchange. This would usually unfold very smoothly in the clinic and without serious remark or reflection from either professionals or expectant parents. However, for me, being able to observe this allowed me to think about – for instance – expected responsibilities and roles of professionals and expectant parents, who and what is prioritized, and what classifications (such as disabilities like DS) are constructed. For me, this is what made it extraordinary!

One chapter of your book looks at how screening of Down’s syndrome becomes an ordinary, default medical practice that becomes ‘standard’ for certain groups of pregnant women. What are the biopolitical consequences of this naturalization on women and their agency to question and reject this form of surveillance?

Yes, this argument mostly comes from chapter three but I discuss it throughout the book. For me, the major consequence of this routinization is that DS screening becomes seen as simply another short stop on the pregnancy journey. There are claims in other research that expectant parents seemingly consent to DS screening as an instance of conformity rather than being the product of any active decision-making process. Their argument is that choices are rarely free, with the divide between voluntary choice and coercion being very blurred.

In my own work, what I show is that whilst expectant parents may reject DS screening for a variety of reasons, the framing of it as ‘just another test’ – either explicitly, such as describing screening as a ‘simple test’, or implicitly, such as leaving consultation doors open and framing ultrasound scans as a fun excursion rather than a serious procedure – may lead to some people passively opting for it. This has certainly been the case for several parents I have talked to both in my research and in more general conversations outside of work. It seems that DS screening is viewed, and I think this is often very implicit and unintentional, as simply another expected and unquestioned moment, which allows it to continue as part of routine medical surveillance during pregnancy.

I also discuss this in the first part of chapter six, where I outline how women are increasingly made responsible for ensuring fetal health. They are increasingly embroiled in ideas of both normality and responsibility, with one result being that consenting to screening could be seen by expectant mothers, and particularly ‘older mothers’ (i.e. aged 35 or above), as an expected and responsible action. I feel that DS screening is shaped as an obligatory passage point on the road to parenthood, which further normalizes it. So it seems that the capacity for parents to question and reject DS screening – perhaps now a compulsion rather than a choice – may become masked.

Terms like ‘risk,’ ‘quality of life’ are often used to talk about disability that gives only one part of the story  and not the sociocultural. Whether it’s about Down’s syndrome or any other congenital disability, do you have thoughts on how reproductive health professionals can expand their framing of disability to something other than negative?

I see what you mean. In the book, I do show how a negative impression of DS – and disability more generally – is created and reproduced in the prenatal clinic. But I do want to stress here that I do not believe professionals purposefully do this. Not at all. Actually, in the offices and personal conversations, the professionals frequently provided positive, if rather generalising, descriptions of people with DS. Many also had their own private misgivings about screening. As such, I would suggest it is too simplistic and harsh to suggest that professionals deliberately describe DS in negative ways. I hope that I made this clear in the book!

But what I do show, particularly in chapter five, is that DS is rarely discussed in consultations. DS is made absent because parents are assumed to already ‘know’ about DS, because it is not seen as important to discuss in an already time-restricted consultation, and because many of the professionals feel that they need more training and knowledge before providing details on DS to expectant parents. What happens is that DS is subsequently framed within the negative collectives of ‘risk’, ‘problem’, and ‘abnormality’ – and its silence maintains the idea that DS should be the topic of prenatal investigation. So I claim that this framing – albeit inadvertent – can give a negative impression of DS.

In terms of how this can be resolved, particularly in the context of non-invasive prenatal testing (NIPT) coming onto the scene, I am not sure that it ever can be. I wanted to avoid proposing specific policies, but I think that there are a few things that could/should be done to provide a more nuanced picture of DS in prenatal care. For starters, there should be more fundamental discussions around the values embedded in screening/testing. Rather than talking only about autonomy or ‘informed choice’, we should think about how one conveys information about DS during pregnancy and about what lives are valued in modern healthcare systems and society as a whole. This involves recognizing that DS is a very complex condition – particularly with respect to prognosis – and conversations about screening should reflect this.

We also need to acknowledge that we are entering an era in which we may eventually be able to screen and test, and potentially terminate, for not only ‘serious’ conditions but also for ‘mild’ conditions and late-onset disorders. As such, healthcare professionals should be allocated the time and provisions to be properly trained so they can competently deliver services in relation to knowing about the technology, the conditions screened for, and the limitations of medical knowledge. This will ensure that parents receive information which is not overly pessimistic, but is not overly sentimental either. This will offer them a better opportunity to successfully digest this and make a decision which is right for them. In short, we should invest money and energy not simply into the science and technology of screening, but also into the training and support for it. This will help to provide balanced information and counselling, possibly with the involvement of disability charity organizations and other stakeholders.

More idealistically, I believe that in order to move closer towards ensuring that choice is truly informed, we must cultivate a more accepting and inclusive environment in which screening is diffused. We are seeing, particularly in the UK, huge cuts to disability services that are fueled by neoliberal ideals and structural deficiencies. I believe that such developments contribute to continuing negative valuation of people who are disabled. Therefore, if we are to truly offer informed choice, there must be fundamental changes at a social structural level to ensure that people with disabilities are not subjected to processes that excludes their full participation in society, and that disability is recognized as a universal aspect of human life which does not always dominate the lives of people with a condition. This is a long-term and optimistic aim, for sure…

What’s been the response to your research by people in disability studies or sociology? Have you had any feedback from people in the UK disability or Down’s syndrome communities?

The book has only just been published so the reaction is difficult to gauge at the moment! But the general response to my research has mostly been quite positive. I have been in touch with various people about my research and feedback usually provides me with confidence that my claims resonate with a range of different groups including academics, disability rights groups and charities, and healthcare professionals. But I think it is best to be very modest about this, as I will never truly know how people feel about my work!

I am very glad that my arguments have been picked up by some people, but I think that I have been explicit in the book and elsewhere that I write about an immensely complex practice. On occasions, what I write does not reflect well on professionals – and perhaps even on expectant parents. I would like to repeat that I am very grateful to the professionals who let me be a part of their worlds for so long. What I say in this book will not always paint them in the best light, but it is crucial to remember that hospitals are incredibly dense settings and it would be unfair to depict life there as a tale of heroes and villains. My policy has been to not pass judgement and to provide what I feel is a sympathetic but clear, fair account. The temptation is to become aligned with one position, such as being ‘pro-choice’ or ‘pro-life’ – and this frequently has the effects of criticizing and stigmatizing one group of people. I wanted to avoid this trap and stay with the idea that this is hugely messy and that this book represents my effort to make sense of this complexity. I do not necessarily align myself with one ‘stance’ on this issue. My role all along has been to be a sociologist who provides my own interpretation of events, even if other people do not agree with everything that I say.

What do you hope readers will come away with after reading your book on Down’s syndrome’s place in reproductive politics and the creation of meaning by multiple individuals, systems, and environments?

I hope that readers come away with a better, and perhaps even different, understanding of DS screening – and how everyday interactions in the prenatal clinic can shape our own values and the world we live in. And I hope that readers leave with more questions than answers. Prenatal screening throws up a range of key social and ethical issues, some of which are not fully dealt with in this book and many of which require our immediate attention.

Is there anything else you’d like to share with me?

I would only add that the introduction of NIPT (non-invasive prenatal testing) in the UK, US, and other countries will both amplify and extend many of the issues raised in this book. In my view, and I know that I am not alone here, it is important that we capitalize on this moment and fully explore the various effects of this technology as a matter of urgency. Finally, I would like to say thank you for the interview. I have really enjoyed talking about my work and I hope that you like the book!

About the Author

Gareth M. Thomas is a Lecturer in Sociology in the School of Social Sciences at Cardiff University, UK. He is a sociologist who is interested in – among other things – medicine, disability, social stigma, reproduction, health and wellbeing, technology, place, and interaction.

Twitter: @gmt_88

Header image description: Book jacket for “Down’s Syndrome Screening and Reproductive Politics: Care, Choice, and Disability in the Prenatal Clinic: Care, choice, disability in the prenatal clinic.” The title is in black text against a white background. There is an ultrasound machine with a monitor showing something indistinguishable on the left-side of the image. Next to the ultrasound equipment is an exam table. The author’s name, “Gareth M. Thomas” is in black text below the title.