The World Health Organization (WHO) has released two companion reports regarding the potential application of human genome editing in improving public health.
“Human genome editing has the potential to advance our ability to treat and cure disease, but the full impact will only be realised if we deploy it for the benefit of all people, instead of fueling more health inequity between and within countries,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General.
The report highlights the growing use of genome editing tools such as CRISPR-Cas9 (clustered regularly interspaced short palindromic repeats; Cas9 nuclease) and the potential for these tools to make edits to the human genome. The concept is currently the focal point of an ethical debate, as any edits to the human genome could alter the genetic makeup of the descendants of all individuals descended from the altered individual. In effect, this would place the evolutionary future of the human species into our own hands.
Such a concept has many worried, as it recalls controversial practices of the past such as eugenics. Should the practice of human genome editing not be heavily regulated, it could be taken to dangerous extremes. However, the potential for altering the human genome holds countless medical benefits.
Rare diseases — a group of diseases that cumulatively affect around 350 million people worldwide, despite the infrequency their name implies — are, for the most part, untreatable. These genetic conditions often result in short, or significantly impacted lives for those who are affected. Many have no treatments, or are limited to symptom management. With genome editing, some of these conditions could be entirely prevented.
Therein lies a warning from the WHO; in order to prevent many diseases, the genome must be altered at the embryonic stage. This means that the genes will be passed from the genetically altered individual to their own children. As the genes altered through this process would typically be from an ineffective, disease causing gene, to the healthy alternative, such a genetic alteration and, in turn, the change in their own children would be entirely beneficial.
The WHO has suggested a number of scenarios in which the use of human genome editing drifts from a strictly medical use. The governance framework offers concrete recommendations for dealing with specific scenarios such as
- A hypothetical clinical trial of somatic human genome editing for sickle cell disease proposed to take place in West Africa
- Proposed use of somatic or epigenetic genome editing to enhance athletic performance
- An imaginary clinic based in a country with minimal oversight of heritable human genome editing that offers these services to international clients following in vitro fertilization and preimplantation genetic diagnosis
This creates major issues as the technology could be used for non-medical purposes; for example, to create athletes that far outmatch non-genetically enhanced individuals. This, however, is just the tip of the iceberg. A key concern of the WHO is the availability of any future genome editing technology.
India already shows great disparities in the availability and capacity to avail healthcare. These divides take place along urban and rural divides, as well as by wealth. Should genome editing only be available to the wealthy, this could create a situation in which those in favourable financial situations are not only able to avail better health services, there may arise a situation in which those with the money can make themselves immune to various diseases. While this occurs, those left in poverty would receive nothing. In this eventuality, some diseases may be found exclusively within impoverished communities and individuals.
There is also the threat that the genome editing technology will be made available only in wealthy nations. As of now, Indian genomes only represent 0.2 percent in the global genetic databases. The current majority of genomes — around 96 percent — are of European ancestry. With known genes almost exclusive to the Indian population that present a unique risk in developing diabetes, ignoring the study of Indian genes leaves what could be a medical goldmine all but untapped.
“These new reports from WHO’s Expert Advisory Committee represent a leap forward for this area of rapidly emerging science,” said WHO’s chief scientist, Dr Soumya Swaminathan. “As global research delves deeper into the human genome, we must minimize risks and leverage ways that science can drive better health for everyone, everywhere.”
To ensure that dystopian eventualities in which the wealthy are simply above many diseases, leaving impoverished individuals to suffer, it must be made abundantly clear that a technology as powerful as human genome editing must be available to all. Failure to do so could result in a future in which those that can access the technology are genetically distinct from those who cannot. Such a disparity in healthcare outcomes is unquestionably wrong.