About the authors: is a Research Professor in Philosophy at 国民彩票. is Associate Professor in Medicine at the University of Cape Town.
In July 2021, after more than two years of study and consultation, the released three reports: , a and on human genome editing.
The governance framework lists a number ethical values and principles, many of which have not been included in previous international reports on human genome editing. The commitments to inclusiveness, fairness, social justice, non-discrimination, solidarity and global health justice inform the content of all three reports.
The committee also addressed research involving both somatic and germline human genome editing.
Somatic human genome editing involves making changes to the DNA of non-reproductive cells. The therapeutic aim is to correct mutations responsible for genetic disease. Germline human genome editing involves making changes to the DNA of reproductive cells. These changes become heritable when the genetically altered cells are used for reproduction. For many, heritable human genome editing is ethically contentious because of its impact on future generations.
As members of the WHO Expert Advisory, we appreciate the challenges in moving forward with human genome editing technology, given our commitment to ensure that this is not just personalized medicine for an elite few.
Access and equity
Early in the committee鈥檚 deliberations, Francis Collins, director of the National Institutes of Health in the United States, suggested that attention focused on anything other than heritable human genome editing research was a 鈥�.鈥� The WHO did not share this perspective, as reflected in the mandate given to the expert advisory committee.
For the most part, the committee elected to side-step the debate on the permissibility of heritable human genome editing and focus more broadly on issues of access and equity. On advice from the committee, WHO Director-General Tedros Adhanom Ghebreyesus stated that 鈥�.鈥�
To improve access to information about clinical trials involving somatic human genome editing and to promote equitable access to the potential benefits of research, in August 2019 the committee launched the . This is a publicly accessible database currently in a pilot phase.
Sickle cell disease
Several potential therapies using somatic genome editing are in development, with some currently in clinical trials.
Sickle cell disease is an extremely painful, debilitating disease that currently can only be managed, not cured. The red blood cells of people with sickle cell disease are shaped in the form of a sickle and tend to clog up small veins, interrupting the blood flow to parts of the body and causing excruciating pain.
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Sickle cell disease is particularly common in areas of the world that have had a high burden of malaria 鈥� at least partly because having one gene for sickle cell disease protects against severe malaria. The and is particularly high in parts of Afr