In their paper ‘The “serious” factor in germline modification’, Kleiderman, Ravitsky and Knoppers rightly highlight the ambiguity in the oft-utilised term ‘serious’ in legal discussions of human germline genome modification.1 They suggest interpretation of this term may benefit from a framework based on human rights rather than solely objectivist or constructivist frameworks. In this response, I show the authors provide a narrow and hasty dismissal of objectivist frameworks by defining objectivism broadly as ‘based on biological facts’ early on but later criticising genetic treatment lists, a single narrow implementation of only some of the facts. Furthermore, I will show their consideration of the right to science is biassed towards the material innovations of science, the authors succeed in recognising but fail in elaborating on the knowledge gained from scientific progress; knowledge which may ultimately update moral intuitions and change the nature of ethical conversation across cultures.
- genetic engineering
- genetic selection
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In their paper ‘The “serious” factor in germline modification’, Kleiderman et al rightly highlight the ambiguity in the oft-utilised term ‘serious’ in legal discussions of human germline genome modification (HGGM).1 They convincingly suggest interpretation of this term may benefit from a framework based on human rights rather than solely objectivist or constructivist frameworks. However, in their analysis the authors provide a narrow and hasty dismissal of objectivist frameworks. They define objectivism broadly as ‘based on biological facts’ early on but later end up criticising only a single, narrow implementation of only some of the facts, specifically the implementation by some establishments of using lists of genetic conditions. Furthermore, their consideration of the benefits of scientific advances is biassed towards the material innovations of science, recognising but failing to elaborate on the knowledge gained from scientific progress which may ultimately update moral intuitions and the understanding of human rights across cultures.
The authors’ dismissal of applying objectivism to the interpretation of ‘serious’ rests on the claim that doing so will leave ‘no room for behavioural, psychological and social contexts’. This is simply untrue of a comprehensive implementation of an objectivist interpretation of disease. If objectivism deals with biological facts then it is unclear why or how behavioural and psychological contexts would be left out under this framework since behavioural and psychological facts are also biological facts. Take the case of two diseases: schizophrenia and frontotemporal dementia. Evidence has shown both schizophrenia and frontotemporal dementia have strong genetic factors.2 3 However, the aberrant behaviours in both these diseases is not yet completely understood at the genetic level, certainly not as well as the genetic underpinnings of phenylketonuria. Even so, there is no reason to believe the behaviours and psychopathologies inherent to the progression of these diseases is anything other than biological. An incomplete understanding of these two diseases’ genetic mechanisms certainly should not stop an objectivist framework from classifying these two conditions as diseases. Therefore, it is reasonable to expect an approach to disease that is ‘based on biological facts’ would consider schizophrenia and frontotemporal dementia in its disease model (or more broadly, any disease with psychological and behavioural components but without a complete understanding of underlying genetics); and any model that does not do so may be considered one that attempts to be objectivist but fails. This is where the authors err. Instead of criticising an objectivist approach to disease, what the authors actually end up criticising is an interpretation of ‘serious’ diseases that fails to consider all the biological facts (ie, lists of serious conditions). Thus, these lists are best criticised as incomplete implementations of an objectivist framework, one that fails to comprehensively recognise the biological underpinnings of disease and thus fails to establish proper inclusion and exclusion criteria.
The authors also highlight the human right to science. However, their analysis is biassed towards material benefits. To their credit, they recognise the benefits of scientific advancements can also include knowledge gathered; but to their detriment, they cursorily gloss over this point, missing a key takeaway: scientific knowledge can inform ethics and any right to scientific knowledge would, therefore, also include a right to inform one’s ethics. Scientific knowledge already has an undeniable history of informing ethics. Consider the case of epilepsy. Patients with epilepsy were discriminated against by some states as late as 1956.4 These patients were not legally permitted to secure employment, marry, or drive cars. What changed the beliefs that led to these discriminatory laws? An increased understanding of epilepsy and a dialogue revolving around the facts certainly were factors in updating these beliefs and enacting cultural changes. While material technology is important, revising ethics with increasing knowledge of the world is just as crucial. Therefore, how this knowledge is distributed is also crucial. Would it be ethical to not allow one to update their ethics by restricting the information that may allow them to do so? Clearly, the spread of scientific information is not only a question of material advancement but also one of ethical advancement as well.
While Kleiderman, Ravitsky and Knoppers successfully highlight the ambiguity inherent in the oft-utilised term ‘serious’ in legal and political discourse regarding the treatment of genetic disease, their analysis commits two errors. First, they cursorily dismiss objectivist approaches (defined as having to do with biological facts) by criticising only a single narrow implementation that incorporates only some of the biological facts (ie, a list of ‘serious’ genetic diseases). Second, their consideration of the right to scientific advances is biassed towards material advances, failing to account for subsequent advances to ethics and the dissemination of these advances across cultures, creeds and political systems. By taking into account these findings, the authors’ case may gain a new depth of analysis that may lead to more stimulating and more specific conversations in the future.
Correction notice This article has been updated since it was first published online. The author name 'Ravitsky' was incorrectly spelt as 'Ravisky' and has now been amended.
Contributors I am the sole author of this publication.
Funding The author has not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; internally peer reviewed.