Earlier this month, the World Health Organization released its latest estimates of the global impact of cancer, predicting over 35 million new cancer cases in 2050, a 77 per cent increase from the current amount.
This rapid growth can to some extent be explained by demographic factors – our global population is growing and ageing. But the WHO notes that it also reflects changes to people’s exposure to risk factors: ‘Tobacco, alcohol and obesity are key factors behind the increasing incidence of cancer, with air pollution still a key driver of environmental risk factors.’
Thankfully, immense research efforts offer new insights into how cancers arise and provide new routes for therapy. A key domain for research and clinical applications is epigenetics: the study of the mechanisms through which environmental factors (both outside and inside an organism) influence gene expression and cell functioning. Epigenetic findings provide us with a better understanding of the interface between our genes and our environments. But as important as this knowledge is, it also raises a plethora of ethical questions, many of them related to responsibility. Who is responsible for the exposure to the risk factors mentioned above? To what extent are we individually responsible for protecting and promoting our health?
The WHO notes that there are significant disparities in cancer treatments and outcomes related to socioeconomic factors. If many people do not have the resources to make healthy choices, a discourse of individualised responsibility seems unfair. Given the impact of structural inequalities on people’s capacity to live a good and healthy life, which responsibilities do collectives such as governments, medical organisations, companies and NGOs have? Consider, for example, a report by Cancer Research UK that indicates that insufficient research funding is to blame for a slower rate of progress in cancer survival rates. What does a fair and just distribution of epigenetic responsibility look like, not only for cancer but for the many other conditions that are affected by our lifestyles and environments? Who is responsible for safeguarding the health of future generations – and how can we actually make sense of thinking about the health of people who do not yet exist?
Our new edited volume Epigenetics and Responsibility: Ethical Perspectives looks at some of the complexities of such ethical and philosophical questions. In each chapter, our authors provide philosophers, (bio)ethicists, scientists, policy makers and the broader public with different perspectives on pressing ethical issues in the context of epigenetics. Here are some key insights with regards to the ethics of epigenetics:
Epigenetic justice can only be obtained by systemic, collective action
Structural socioeconomic inequality means that epigenetic health is not evenly distributed. Environmental risk factors, such as air pollution noted in the WHO report, tend to have a larger impact on those who are less well off, for example because affordable neighbourhoods are often located closer to industrial areas. Those unequal distributions of health risks and diseases are not only a matter of current generations. Structural issues often have a long history, and epigenetic health effects can to some extent be inherited by future generations. Thus, we might characterise epigenetic injustice as a historical-structural injustice that needs to be dealt with in a systemic manner.
Disability theory and intersectional feminist thinking can help us to ascribe responsibility to collective agents on the basis of, for example, their capacity to improve living conditions or their complicity in existing or historical pollution. Since collectives are often just as constrained by uncertainty and limited control as individuals – sometimes even more so – we may also appeal to collective agents to protect our epigenetic health based on their worth and the values they promote. For example, we can appeal to the social functions of public health agencies when we demand that they do everything in their powers to avoid a sharp increase in cancer prevalence in the future.
Responsible research means interdisciplinary research
Structural and pervasive issues such as the global impact of cancer require strategies that take many perspectives and approaches on board. Scientists and ethicists need to actively engage with voices outside of academia, and within institutions, they can benefit immensely from collaborating across disciplines. For example, bioethicists can work together with scientists to promote a developmental view of life that emphasises dynamics, context and lived experiences of people. Another matter calling for urgent interdisciplinary collaboration is the increasing reliance on artificial intelligence and machine learning for the analysis of epigenetic data. Academic and clinical communities have a collective responsibility to determine what a good outcome of such applications would be.
Those collaborations are not only fruitful when it comes to epigenetics: they are also crucial in understanding other fast-paced scientific developments, such as microbiome research. Thinking about the relationship between our gut microbiome and our whole bodies and minds leads to fascinating new ethical questions. For example, what does it mean to hold someone responsible for their mental health when we know that the human ‘self’ coexists with trillions of microbes that may alter their behaviour?
Avoiding epigenetic harm in future generations is crucial, but theoretically complicated
If we want to increase research into cancer or other diseases with an eye on the health of future generations, does it make sense to claim that our efforts now can harm or benefit people who do not yet exist? We may be intuitively inclined to say that it does, but this seems hard to explain why with our usual understandings of blame and (genetic) identity. Many of us still tend to think that our numerical identity is established at conception – what makes me who I am is ultimately my genetic make-up. However, epigenetics shows us that even at the cellular level, the biological is not clearly distinguishable from the social or contextual. If we think that epigenetics is important for our identity, do we want to conclude that interventions or events that cause epigenetic changes can change who someone is altogether?
It is the task of philosophers to think through those complexities, but it should not prevent us from taking collective action to improve the circumstances for future generations. This is not merely the responsibility of (future) parents, since many other people in the environment of children contribute to their lives in social and biological ways. Reflecting on epigenetics can provide a timely update to the adage ‘it takes a village’ to raise and shape a child.
Emma Moormann is Postdoctoral Researcher at the University of Antwerp. Anna Smajdor is Professor of Philosophy at the University of Oslo. Daniela Cutas is Associate Professor of Medical Ethics at Lund University.
The book is a deliverable of the ERC project NeuroEpigenEthics (grant agreement No 804881).
Epigenetics and Responsibility, edited by Emma Moormann, Anna Smajdor and Daniela Cutas, is available to read open access on Bristol University Press Digital.
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Image credit: National Cancer Institute on Unsplash