The CRISPR babies: the story unfolds
by Patrick Foong, Bio Edge:
Remember the shocking announcement of the first births of genome modified twins (Lulu and Nana) globally?
In an article in Nature Biotechnology, we learn a little more about these girls, now toddlers. But, it says, “… their fate remains shrouded in secrecy amid swirls of rumors. Many people contacted for this story refused to speak about the babies … Some would speak to Nature Biotechnology only on condition of anonymity”.
In 2018, Dr He Jiankui announced the birth of the world’s first genetically engineered babies, Lulu and Nana. They had their genomes edited with CRISPR to confer a resistance to HIV infection. Using IVF to produce the embryos, they were genetically altered by disabling the CCR5 (C-C motif chemokine receptor 5) gene (the gene produces a receptor that allows HIV to enter and infect cells) during the single-cell stage.
There are multiple concerns associated with CRISPR, including the unintended consequences of using this cutting-edge technology on people. Furthermore, heritable genome editing is not yet ready to be tried safely and effectively in humans. Thus, it is critical that this activity could only proceed when it provides the most favourable balance of benefits and harms.
Medical examinations have been performed on the gene-edited children, including blood tests. These were conducted at birth, at one and six months and at one year. Liver function tests will follow this at age five and IQ tests at age 10. And there is HIV testing. These are indeed laudable.
What about the assessment of their mental health? There do not seem to be any definite plans for this evaluation, even of a need to inform the twins of their unusual conception circumstances. Following the general recommendation of parental disclosure to their IVF conceived children about the nature of their conception, children born from gene editing should also be informed about what was done to them as embryos and the reasons for the activity.
Moreover, the twins might be treated differently due to their different susceptibilities to HIV infection. For example, Nana might be refractory to HIV infection as two alleles of her CCR5 gene were altered. Lulu’s genome show one edited allele. Thus, one twin could be regarded as a preferred future partner.
At present, there are still very serious risks associated with CRISPR. Safety is a huge concern. For instance, there is the danger of mosaicism. This happens when some of the cells carry the edit but others may not.
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