Book Review: Epigenetics and Responsibility – Ethical perspectives

Epigenetics and Responsibility: Ethical Perspectives
Edited by Dr Daniela Cutaş, Dr Emma Moormann and Professor Anna Smajdor
Published by Bristol University Press
ISBN-10: ‎‎1529225426, ISBN-13: 978-1529225426
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Epigenetics is the reality that undermines the nature vs nurture argument that has dominated public debate over genetics for decades. Taking a social science perspective on the issue, the authors of Epigenetics and Responsibility – Ethical Perspectives ask: who is responsible for ensuring our epigenetic health?

Having always held natural sciences very close to my heart, usually viewing them through the 'hard facts' positivist lens, it was refreshing and illuminating to reflect on epigenetics from the social science perspective.

The introduction of the book sets the stage very clearly by explaining how epigenetics bridges the gap between nature (genes) and nurture (environment), and how this undermines the validity of the nature versus nurture debate.

The authors then introduce the concept of responsibility:

• Who is responsible for what? And concerning whom?
• What is a normative standard? And where is the assignment of responsibility?

The discussions focus on responsibilities of individuals vs collectives, being responsible for past events (being blamed of praised) or future events (being accountable for future success), concerning the general population, or specific communities, or children, or future offspring. The authors predominantly focus on moral responsibility, rather than causal, legal, or political responsibilities, in context of epigenetics, yet they acknowledge overlaps with the other normative standards.

There is no clearcut definition of 'epigenetic responsibility' provided within the book, where the concept is analysed by multiple authors from different perspectives. However, the 'epigenetic responsibility' concept is based on the dynamic view of human nature, the fact that the human body is not static and it is not insulated from environmental influence, thus impacting ascribing responsibility for health.

It has long been understood not just by biomedical scientists and clinicians, but also by the general public, that the environment that we live in does influence our health, and that others can be held accountable for manipulating this environment. The book explains how our epigenome can be influenced by our environment, and in turn, how this can influence the way our genes are expressed, and the impact this can have on our health. Examples are given of the effect of exposure to environmental toxins, and authors ask, what could epigenetic responsibility look like in practice?

One of the authors argues that a collective responsibilities perspective is recommended, rather than individual responsibilities, in the context of epigenetics; it should also be forward-looking, focused on ensuring success of future health and environmental projects. But authors also ask, is epigenetics too complex for ascribing any responsibility for it? Can a 'normal' or healthy epigenome even be defined and a reference baseline established?

The book also asks what individual epigenetic responsibility might look like, and asks: will the individual be knowledgeable enough to be able to be held responsible? Authors propose artificial intelligence (AI) analysis of epigenetics data greatly increases the scope and possibilities for personalised or precision medicine, which in turn puts more responsibility on the individual by providing them with more precise information regarding potential lifestyle choices and/or medical interventions in their specific circumstances.

However, through personalised approaches, are we risking stigmitising women by putting more responsibility on them in terms of fertility and parenthood. The authors argue that although scientific evidence exists for linking the epigenetic quality of male reproductive tissues to health outcomes of the child, policing of reproductive choices has so far affected predominantly women.

The question of knowledge and understanding and its importance for potentially assigning individual responsibility for epigenetic effects was evaluated in the context of AI analysis of diagnostic medical tests. The authors raised the issue of a 'responsibility gap' due to AI involvement. Machine learning means that developers are not always able to explain how the AI machine has arrived at a certain outcome. How can physicians adequately present this information to patients?

Physicians would need to have a comprehensive understanding of these processes for effective interpretation of results, and successful communication with the patients, given their potential implications. Pondering this subject brings to mind a number of cases in recent history, the most well-known is probably that of Sally Clark, where women were being found responsible for their children's deaths due to a physician's insufficient understanding of statistical analyses and misinterpretations of the analysis test results.

This then begs the question, how much health literacy would be expected of patients and would it deepen the existing divides, biases and prejudices? While reading that chapter I could not help but recall the story of Henrietta Lacks, who had not been consulted about using her tissue for research, on the premise that she would not know what to do with information anyway (see BioNews 1202, 1201, 1117 and 1107).

Throughout the book, 'epigenetic responsibility' is also considered in the context of identity questions. This question is asked in light of a public that understands genetics as inherently deterministic. But what about the epigenetic mechanism that underpins whether bees become queens or workers, authors counter?

The theme of identity relates to parenthood debates, where one of the authors brings to the readers' attention the tension existing between biological parenthood and social recognition of parental status in context of the general assumption that a child can have no more than two parents. For instance, is a person considered responsible for a child because they are biologically related, but not involved in their daily life? Or is a person considered responsible for a child because they have been caring for this child, even though there is no biological relationship? Epigenetic influences will be involved in both cases, thus potentially blurring the boundaries between biological and social parenthood, and extending and diluting responsibility for the concerned children.

And what about lifestyle and health choices that, through epigenetics, have the potential to influence future children who have not only not been born yet, but not even conceived? The authors pose the question of whether the individual biological parents should be held predominantly responsible in these cases, or whether collectives such as government organisations would bear more responsibility through, for instance, environmental policies affecting the future offspring, either directly or inter- or transgenerationally?

Finally, this very enjoyable, yet educational read, reflects on how, historically, human biology has been viewed as static and separate from nature, as per the assumption that it is determined by genes, and the genes by default do not change. Yet, it is epigenetics that allows for adaptability, fluidity and plasticity that affect the nature-nurture distinction. It is this false dichotomy that the authors effectively challenge throughout the book.

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