Hubris versus humanitarianism
Introduction
There have been recent and rapid developments in the space of heritable human genome editing (HHGE), enabled by the CRISPR (Cas-9) technique and derivative innovations.
There have been many experiments done in treating genetic illness with gene editing in children or adults in the past, but little commercialization due the limitations of technology to concerns about the application of such techniques upon ethics and society.
Edits on single genes can permanently nullify transmissible genetic ailments such as muscular dystrophy, beta-thalassemia, cystic fibrosis, and Tay-Sachs disease. However, many conditions with a genetic basis are not linked to a single gene, but are rather a compound of many different genetic correlations. They may also require an environmental trigger in addition to a genetic predisposition, though such a trigger is often unclear or idiopathic.
Concerns
One major concern of genetic editing is the prospect of altering germline DNA which can be passed down to future generations. This would mean that children would be affected by the decisions of their ancestors, or indeed any damage or excessive editing they or their antecedents were subjected to.
In 2018 the first reported human children were born with genetic enhancements in the People’s Republic of China. These baby girls were selected and edited as embryos and then gestated. Their edits appear to be heritable, and this appears to have been a ‘Sputnik Moment’ for HHGE, albeit one that has scientists around the world aghast at the potential implications.
Implications
There is a fear that such innovations could increase inequality in society, by enabling healthy and affluent people to further cement their advantages, potentially creating super-humans who would eclipse regular ‘kludges’.
The specialization of labor in capitalism has enabled far greater efficiency that would otherwise be possible. Genetic specialization might therefore be encouraged, whereby working class people might be encouraged to enhance their strength or stamina. Such incentives could lead to runaway effects, or a race to the bottom.
There are also risks of a loss of genetic diversity. Many diseases are adaptive to some degree. For example, Sickle Cell Anemia is protective against Malaria, thus it was selected for through evolutionary processes. The application of HHGE to make apparent improvements therefore has a risk of ‘ironing out’ mutations which may be beneficial in certain contexts.
Response
The World Health Organization’s Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing is deliberating on national and global governance strategies.
The International Commission on the Clinical Use of Human Germline Genome Editing, which was convened by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences, and the U.K.’s Royal Society and includes members from 10 countries, was tasked with addressing the scientific considerations that would be needed to inform broader societal decision-making.
Put briefly, The Committee’s observations and recommendations are as follows:
A moratorium on genetically enhanced pregnancies until technology is more safe and reliable.
Further societal dialogue required.
Situations vary, so blanket rules are not likely to be helpful.
Limit to monogenic diseases of a life-threatening nature, and situations of demonstrated .fertility issues requiring genetic counseling.
Only permit safe and secure techniques that don’t introduce parallel changes elsewhere in the genome (off-target edits).
Biopsy blastocysts to ensure compliance, safety, and efficacy.
Further work with stem cells, including Induced Pluripotent Stem Cells (IPSCs), to avoid use of embryos.
Competent regulatory bodies are necessary, along with an international panel.
Evaluate techniques prior to their deployment.
Watchdogs should be established.
Challenges
In a globalized world, it is challenging to set a moratorium on HHGE. Many jurisdictional flags of convenience will arise, opening clinics in relatively remote parts of the world for wealthy patrons. In fact, banning such technologies outright is likely to create greater inequity in society, due to the Iron Law of Prohibition – whatever is outlawed tends to become more potent. The risks of being caught would potentially lead to a greater number of procedures being done in one go.
Furthermore, government restriction of the availability will have similar problems. Genetic Enhancement run by the public sector might be something like an East German Trabant car – Low quality, expensive, and with a multiple-year waiting list. Meanwhile those with the resources would merely travel overseas.
Even the richest person in the world probably doesn’t have a meaningfully better smartphone than a person on the Clapham Omnibus. The very latest developments in available technology are distributed in constant updates to the masses. It might therefore be most societally equitable to create incentives that makes HHGE more like an iPhone than a Trabant. This might be a challenging policy position from a political perspective, however.
Future Possibilities
It remains to be seen whether non-germline genome editing may also be feasible such as epigenetic histone methylation factors. There is some evidence that epigenetic transmission can occur across generations in C. Elegans and Drosophila Melanogaster, though it’s still debated how much this occurs with human beings.
Evidence is emerging that endocrine disrupting Chemicals (EDCs) have lasting mutagenic effects across generations. The children and grandchildren of mothers who took diethylstilbestrol (DES) have been affected by a greater number of oncologic, fertility-related, intersex, and transgender conditions.
It may be possible to ‘whisk’ epigenes and mutational factors to undo such mutational load damage, but science has yet to make much progress in this sphere. Developments in this space might lead to alternatives to HHGE, however, by mitigating the expression of a certain gene without altering it per se, thereby skirting around the likelihood for problematic heritability.