(MENAFN – The Conversation) The World Health Organization (WHO) recently called on countries to stop all research that could lead to the birth of genetically modified humans. The call was launched with the publication of the recommendations on editing the human genome.
Editing of the human genome has great potential. It can improve human health and medicine by modifying the DNA of cells to correct, introduce or remove almost any DNA sequence that can cause disease. Other potential benefits include new ways to diagnose, treat, and prevent genetic disorders, new ways to treat infertility, improved knowledge of human biology, and contribution to vaccine development.
The potential of this technology was highlighted in 2018 when Chinese scientist He Jiankui announced that he had edited the genomes of binoculars. Its announcement sparked the consternation of many scientists because it highlighted a significant gap in the regulations.
In response, WHO established a committee made up of a global multidisciplinary group of 18 experts. The committee was tasked with developing standards for editing the human genome.
After nearly three years, the panel recently released its recommendations. These advise on institutional, national, regional and global governance mechanisms appropriate for human genome editing.
Read more: Editing human genes: who decides the rules?
The report provides a governance framework for genome editing that countries can use to develop their own regulations. He recognizes that regulations may seem different in each country. Nonetheless, he asks that everyone integrate fundamental values and principles into these frameworks.
The committee produced a series of nine key recommendations. These examine some of the broader issues associated with the governance of human genome editing. It is important that countries try to implement the guidelines so that there can be consensus and a uniform worldwide approach to genome editing.
A guide to good practices
The report divides genome editing into five areas. These correspond to the various potential uses of genome editing. The first is to make changes to the somatic cells (cells of the adult body) after a person is born. The second is to make changes to the somatic cells in utero (in the uterus). The third is to make changes to germ cells (embryos, sperm, eggs). The fourth is to make changes to the DNA code and the fifth is to make changes to improve a person.
Read more: The limits of human embryo research have been changed: this calls for public debate
Its recommendations included:
Leadership of WHO and its Director-General: The committee recommended that the Director-General of WHO demonstrate scientific and moral leadership by being open to the challenges and opportunities inherent in editing the human genome. It should also highlight the consequences of developing and using technologies without first thinking about these issues, and of making decisions collaboratively.
International collaborations: The report recommended that WHO work with others to develop an international process to create a system to govern editing of the human genome. This would require holding meetings with regulators in different countries to explore the possibility of international agreements to govern the technology. Countries would also need to discuss their vision for human genome editing, as well as the similarities and differences.
Human genome editing registers: The committee recommended that WHO ensure that any clinical trials involving this technology be approved by the appropriate research ethics board and then included in the Human Genome Editing Clinical Trials Register. That way there would be a repository of all the clinical trials going on around the world.
International research and medical travel: The Director General is expected to make a political statement that research into the technology should only be carried out in countries with oversight mechanisms to regulate its use. This will prevent people from traveling to countries where this technology is not regulated.
Research and other illegal, unregistered, unethical or dangerous activities: WHO should create a mechanism to report illegal, unregistered and unethical uses of human genome editing.
Intellectual property: The registration of intellectual property rights has the potential to prevent technology from becoming inaccessible. The recommendation is that WHO encourage holders of intellectual property rights to ensure that the technology is accessible.
Education, engagement and empowerment: WHO should lead a process to facilitate the global dialogue on human genome editing. This should include the creation of educational materials and models of public engagement.
Values and ethical principles for use by WHO: The committee recommended that WHO create a set of values and ethical principles, which could be used by its expert committees.
Review of recommendations: The report said the recommendations should be reviewed by the WHO in three years. This would examine the progress made in implementing them, as well as how science, technology and society had changed during this time.
The future of gene editing
The recommendations pave the way for a uniform approach to editing the human genome. They aim to help countries create regulatory frameworks for technology, including provisions to prevent unethical uses of technology.
Significantly, the recommendations build on previous reports on human genome editing and include values and ethical principles that were not included in previous reports. The panel is also committed to ensuring that access to human genome editing is fair, equitable and not only available to the privileged few.
This technology is developing at a rapid pace. These recommendations are an important first step in regulating human genome editing. With proper implementation, they will contribute to safe, efficient and ethical uses of human genome editing so that everyone can benefit from the great potential of these technologies.
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