Advanced search
Add to list

Regulating human germline gene editing : should we be concerned about human dignity?

Seppe Segers (UGent)
(2019) In HUMAN REPRODUCTION 34(Suppl 1). p.66-67
Author
Organization
Abstract
Study question Is the violation of human dignity a convincing argument against human germline gene editing? Summary answer Dignity concerns cannot underpin the current ban on heritable genome editing, but they can inform the implementation of side constraints. What is known already Fast developments in the field of genome editing put pressure on legislators and ethicists to investigate whether – and if so: how – this research can be translated into clinical practice in a morally acceptable way. In 2018, the first genome-edited human babies were reportedly born, despite widespread moral concerns about the safety risks of these techniques. Official international documents (like the so-called Oviedo Convention) mainly oppose germline gene editing on the basis of concerns about human dignity. It is, however, unclear whether dignity concerns can serve as a basis to hold on to a ban on human germline gene editing. Study design, size, duration A literature study of the scientific literature was performed to inventory the state-of-the-art of gene editing techniques. Next, official international and legal documents were analysed and claims about how germline gene editing assumedly breaches human dignity were inventoried. This was evaluated against the backdrop of ethical analyses of the concept ‘dignity’ and contextualized by referring to recent reports by international committees that call for an update of current regulations in the light of recent developments. Participants/materials, setting, methods Literature study, conceptual analysis, normative analysis. Main results and the role of chance Human germline gene editing is opposed by both the Council of Europe and UNESCO. Their plea for banning heritable gene editing is based on the argument that this would breach human dignity. However, it is highly dubious whether germline gene editing leads to infractions against human dignity, especially when germline interventions are aimed at avoiding diseases. It is argued in this study that the concept of ‘human dignity’ can also be invoked to plead for germline gene editing, at least for non-trivial interventions. This is not to deny that a focus on human dignity may signal risks of breaching people’s rights, but it is argued that if ‘dignity’ is left unspecified and if it is invoked in a way like it is now by current European and international documents, it has to be concluded that the argument is self-defeating. This is problematic in the light of fast technical developments in gene editing and challenges the legislative and ethical aim of responsible innovation. We show that this underpins recent calls – like those by The European Society of Human Genetics (ESHG) and the European Society of Human Reproduction and Embryology (ESHRE) – to rekindle the debate about the regulation of gene editing. Limitations, reasons for caution The feasibility of germline gene editing is hypothetical. Except for the reported birth of the genome-edited babies in China (November, 2018), the use of these techniques has been limited to research contexts. In addition, ‘human dignity’ is an ambiguous concept, and there is no general consensus on its meaning. Wider implications of the findings The argumentative link between germline gene editing and human dignity is weak which might undermine current international regulations. This underpins recent calls for a public debate about genome editing and how it should be regulated.
Keywords
Human dignity, Dignity, CRISPR/Cas9, Gene editing, Genome editing, Germline gene editing, Oviedo Convention, ESHRE

Citation

Please use this url to cite or link to this publication:

MLA
Segers, Seppe. Regulating Human Germline Gene Editing : Should We Be Concerned about Human Dignity? Vol. 34, no. Suppl 1, 2019, pp. 66–67.
APA
Segers, S. (2019). Regulating human germline gene editing : should we be concerned about human dignity? (Vol. 34, pp. 66–67). Presented at the 35th Annual Meeting of the European-Society-of-Human-Reproduction-and-Embryology (ESHRE), Vienna, AUSTRIA.
Chicago author-date
Segers, Seppe. 2019. “Regulating Human Germline Gene Editing : Should We Be Concerned about Human Dignity?” In , 34:66–67.
Chicago author-date (all authors)
Segers, Seppe. 2019. “Regulating Human Germline Gene Editing : Should We Be Concerned about Human Dignity?” In , 34:66–67.
Vancouver
1.
Segers S. Regulating human germline gene editing : should we be concerned about human dignity? In 2019. p. 66–7.
IEEE
[1]
S. Segers, “Regulating human germline gene editing : should we be concerned about human dignity?,” presented at the 35th Annual Meeting of the European-Society-of-Human-Reproduction-and-Embryology (ESHRE), Vienna, AUSTRIA, 2019, vol. 34, no. Suppl 1, pp. 66–67.
@inproceedings{8620990,
  abstract     = {Study question
Is the violation of human dignity a convincing argument against human germline gene editing?

Summary answer
Dignity concerns cannot underpin the current ban on heritable genome editing, but they can inform the implementation of side constraints.

What is known already
Fast developments in the field of genome editing put pressure on legislators and ethicists to investigate whether – and if so: how – this research can be translated into clinical practice in a morally acceptable way. In 2018, the first genome-edited human babies were reportedly born, despite widespread moral concerns about the safety risks of these techniques. Official international documents (like the so-called Oviedo Convention) mainly oppose germline gene editing on the basis of concerns about human dignity. It is, however, unclear whether dignity concerns can serve as a basis to hold on to a ban on human germline gene editing.

Study design, size, duration
A literature study of the scientific literature was performed to inventory the state-of-the-art of gene editing techniques. Next, official international and legal documents were analysed and claims about how germline gene editing assumedly breaches human dignity were inventoried. This was evaluated against the backdrop of ethical analyses of the concept ‘dignity’ and contextualized by referring to recent reports by international committees that call for an update of current regulations in the light of recent developments.

Participants/materials, setting, methods
Literature study, conceptual analysis, normative analysis. 

Main results and the role of chance
Human germline gene editing is opposed by both the Council of Europe and UNESCO. Their plea for banning heritable gene editing is based on the argument that this would breach human dignity. However, it is highly dubious whether germline gene editing leads to infractions against human dignity, especially when germline interventions are aimed at avoiding diseases. It is argued in this study that the concept of ‘human dignity’ can also be invoked to plead for germline gene editing, at least for non-trivial interventions. This is not to deny that a focus on human dignity may signal risks of breaching people’s rights, but it is argued that if ‘dignity’ is left unspecified and if it is invoked in a way like it is now by current European and international documents, it has to be concluded that the argument is self-defeating. This is problematic in the light of fast technical developments in gene editing and challenges the legislative and ethical aim of responsible innovation. We show that this underpins recent calls – like those by The European Society of Human Genetics (ESHG) and the European Society of Human Reproduction and Embryology (ESHRE) – to rekindle the debate about the regulation of gene editing. 

Limitations, reasons for caution
The feasibility of germline gene editing is hypothetical. Except for the reported birth of the genome-edited babies in China (November, 2018), the use of these techniques has been limited to research contexts. In addition, ‘human dignity’ is an ambiguous concept, and there is no general consensus on its meaning.

Wider implications of the findings
The argumentative link between germline gene editing and human dignity is weak which might undermine current international regulations. This underpins recent calls for a public debate about genome editing and how it should be regulated.},
  author       = {Segers, Seppe},
  issn         = {0268-1161},
  keywords     = {Human dignity,Dignity,CRISPR/Cas9,Gene editing,Genome editing,Germline gene editing,Oviedo Convention,ESHRE},
  language     = {eng},
  location     = {Vienna, AUSTRIA},
  number       = {Suppl 1},
  pages        = {66--67},
  title        = {Regulating human germline gene editing : should we be concerned about human dignity?},
  volume       = {34},
  year         = {2019},
}

Web of Science
Times cited: