The SCMP claims that because of import restrictions, one 30-year-old father in China was prevented from buying a pilot medication to extend or save his son’s life, and therefore began manufacturing it in an at-home laboratory.
The son was diagnosed with a rare genetic condition called Menkes disease, which affects the body’s ability to regulate copper levels.
Those afflicted often do not live beyond the age of three, but a pilot medication is available designed to help regulate copper levels.
The father claims that he created his first vial in his attempt to replicate the medication just six weeks after beginning, testing it on rabbits, and then himself, before giving it to his son. He claims that his son now receives a daily dose, and that his copper levels have returned to normal two weeks into treatment.
The SCMP claims that authorities say they will not intervene as long as the father does not distribute the medicine to others, and only uses it for his son.
Scientists in China have been operating on the cusp of medical ethics for years after issues regarding the unauthorized use of CRISPR to prevent susceptibility to HIV. The experiments were heavily sanctioned by the Chinese government after being discovered, under fears that there could be unexpected complications from other genes being modified.
Still, there are looming questions regarding the ethics of using CRISPR to potentially cure terminally ill patients, and about restrictions in certain countries, while scientists in others with more lax scientific regulation make critical advances, potentially to the peril of the entire species.
There are also questions regarding the use of intellectual property rules to prevent the dissemination, distribution, or copying of life-saving medications in poorer countries who would never have the capacity to purchase many medications at full price, particularly those designed to treat rare diseases.