FLG: Can you introduce yourself and your work?
I’m a Kurdish-British writer and academic philosopher based in Brighton. My initial academic background was in physics, and specifically astrophysics, but my PhD was in philosophy. Moving disciplines was a very deliberate move. I was attracted to science for its ability to offer answers to questions that were important to me, but with time, those questions began to take on an increasingly social and political character, and science ran out of answers. A training in philosophy has allowed me to apply a similar level of rigour to a much broader set of problems, and these days most of my work examines power and inequality with a specific focus on race, gender, and migration. I have an unusual academic post within a medical school, which is a very interesting vantage point from which to study these issues, and has made it easy to stay tuned into science.
My interest in genomics is relatively recent. I was asked to judge a popular science writing prize last year, which required me to read dozens of books within a couple of months. I was particularly struck by Carl Zimmer’s She Has Her Mother’s Laugh and David Reich’s Who We Are and How We Got Here, both of which are brilliant and have lots to say about the risks and promises of genomics.
FLG: Would you be able to summarise the major findings of your work, and their significance both from a clinical and ethical perspective?
My recent research projects have examined power in healthcare. I’ve been thinking about the “coloniality” of health: the way in which science and medicine neglect, marginalise, or discipline particular bodies along axes that mirror the power relations of colonialism and entrench the current neocolonial economic system.
Health is an important lens through which to understand the mechanisms of power because the basic unit upon which power operates is the body, which means that control of (the health of) bodies is critical to defending the social, political, and economic order. This power can be observed at a range of different scales, from the doctor-patient encounter—consider that the pain reports of women and people of colour are taken less seriously than those of white men—all the way up to global health—note that the United States has effectively removed abortion access for many women across the Global South.
Genetics has a long and shameful connection to coloniality through its association with eugenics, and those working in genomics must keep those lessons in their sights as they move the field forward.
FLG: Although viewed as a revolution by many, what are the risks posed by the widespread adoption of WGS in healthcare and beyond?
Whole genome sequencing (WGS) is a phenomenal technical and scientific achievement, with implications for our understanding of human genetics and its evolutionary history, as well as for the diagnosis and treatment of certain diseases. Yet WGS is limited because genetics itself is limited: we are so much more than our genes. Further, the over-emphasis of genes at the expense of environmental influences is risky, from both an epistemic perspective and an ethical perspective. Identifying people with their genome sequences is likely to encourage genetically deterministic ways of thinking, which introduces the risk of genetic discrimination. (Those who’ve seen the nineties sci-fi film Gattaca will have no trouble imagining these risks.)
While it is currently tightly regulated, human genome editing could allow us to eliminate certain traits and “enhance” others. It seems likely that those modifications would increase the prevalence of socially-prized traits and reduce the prevalence of those deemed to be undesirable. It’s likely that racism and sexism, whether subtle or overt, would play a lead role in the sorts of modifications that would be requested. Tweaks to the human germ-line could ripple down the generations, allowing us to determine the genetics of future populations.
There are other risks to consider too. In recent years, most scientists had finally accepted that race is a social construct rather than a biologically meaningful term. Genomics confirms that allele frequencies in populations are clinical—they change gradually with geographical variation—which is testament to how the complex human history of migration and interaction has led to admixed genes. However, some scientists suggest that geographical clustering of certain allele frequencies might constitute a scientific basis for race. They claim that such a basis might prove useful in tailoring medical interventions to particular groups, which is important to moving away from medicine’s centring of white patients. Others are wary of this interpretation. For one, those geographically-specific allele frequencies don’t match up to our social categorisations of race, which have been informed by the instrumental needs of racist political projects, so we’d be better off using different terminology. There is good reason to be cautious: resurrecting notions of biologically-grounded differences might play into the hands of those who seek to justify racism.
This example illustrates how high the social stakes are for the science of genomics, and how important it is that scientists think critically about the way in which values influence their work, consider the social implications of the research agendas they follow, and are careful about how they communicate their findings.
FLG: Why do certain people or groups tend to lose out on the benefits of genomic medicine?
Medicine has always primarily served the interests of the powerful. Historically, medical research has exploited the bodies of people of colour, disabled people, poor people, and women, and the health needs of marginalised groups remain neglected. There’s no reason to believe that genomic medicine will be any different, so I think we can expect its much-vaunted benefits to be uneven.
While WGS facilitates the development of personalised medicine, there are limits to who will benefit from that medicine. For most of us, factors other than genetics are overwhelmingly responsible for ill health. It’s now widely accepted that health is socially and politically determined. Consider that, on average, a person in Swaziland reaches just 58, but a person in Switzerland can expect to live to 83. The answer to that twenty-five-year discrepancy won’t be found in DNA: it has to do with poverty, the quality of health systems, education, and nutrition. And those things have to do with, amongst other things, the histories of those two countries and their place within the current global economic system.
Except in the case of rare genetic diseases, it seems that one should therefore only look to genetic determinants of health when all environmental factors have been accounted for and optimised. At the moment, that means genomic medicine is largely irrelevant for most of us, whose well being is contingent on changes to structural, rather than individual, realities. This raises questions as to whether WGS is a good use of public funds which might otherwise have bolstered research projects which benefit larger numbers of people. Of course, not all funding is public: WGS has increasingly become a commercial enterprise, but this raises a whole host of other questions about regulation and accountability.
FLG: What research/advances are being undertaken to ensure a more equal access to healthcare?
I have to admit that I don’t feel very hopeful about us moving towards a world in which healthcare is more accessible, as I think that would require a radical restructuring of the broader political conditions within which healthcare operates, and we’re as far away from that as we’ve ever been. Genomics looks set to be dominated by corporations, whose interests are determined primarily by profit margins, so I think we have reason to be sceptical about social justice being a priority. On a more positive note, I’m heartened to see the rise of movements, often led by students, to decolonise science, technology, engineering, and medicine. For too long, these disciplines have been wilfully insulated from the social and political worlds in which they take place. Students are recognising that this leaves them ill-equipped to apply their work to the real world, and less able to bring about the changes they’d like to see. These students are the scientists and doctors of the future, and I am hopeful that they will transform their professions from within.
FLG: What is the most exciting thing happening in genomics right now?
For me, the most fascinating work is in genome-wide mutation studies of ancient human DNA in the field known as paleogenetics, which is granting us a new window on our linguistic and cultural past. Small amounts of relatively well-preserved genetic material are being retrieved from ancient human remains and compared to modern genomes. Unpicking the clues in ancient DNA is already shedding light on early human migration patterns, gender relations, and language evolution, and is offering new leads to anthropologists, historians, linguists, and archaeologists. It’s remarkable to think that until these technologies were developed, ancient bones were just sitting there, carrying details of our collective history which we were unable to unlock. We’ve had to get to the future to understand more of the past. It’s interdisciplinary work in the most exciting sense of the term, and I can’t wait to see how much more we learn in the coming years.
FLG: Why are you speaking at the Festival of Genomics this year?
I’ve been invited to speak at the Festival of Genomics to give a critical view of the field, which means I have the daunting task of entering a space in which a lot of experts are very excited about the possibilities of genomics, and trying to pose some difficult questions, destabilise certain assumptions, and offer suggestions as to how we can make sure that the potential harms of this new science are minimised and its benefits equitably shared. I’m looking forward to having that discussion.
