Child well-being 2.0?

Driven by the best intentions, parents and society have always attempted to ‘manipulate’ children – be it through spiritual guidance, education, nutrition, or vaccines. But now, with the latest biotechnologies, are we entering an era in which we can manipulate children’s genes, to free them from genetic diseases and improve their well-being?

Only 15 years ago, the Human Genome Project cracked humanity’s genetic code. Sequencing the human genome took 13 years and cost $3.5 billion. Today, the same enterprise would take an hour and cost $1,000. The sharp drop in the costs of sequencing DNA and the exponential growth of the resulting data have propelled genetics to center stage in research and clinical medicine.

One area that has been getting a lot of attention is gene editing. Thousands of potential disorders can develop if a piece of DNA mutates: cancer, hemophilia, sickle cell anemia, cystic fibrosis. Now, imagine altering the DNA to eliminate the risk of cancer before it develops – and passing this modification on to future generations.

That, potentially, is the power of gene editing. But the possibility of permanently altering the genome of future generations raises fundamental questions about ethics, health and science. And it could have immense implications for child rights and well-being.

 

Erasing deadly diseases – or entrenching inequality?

Gene editing involves inserting, removing or replacing DNA. Biologically engineered ‘molecular scissors’ can cut the DNA at specified locations in the genome.

Several techniques have been developed in recent years. The most promising is CRISPR-Cas9 – an easy, cheap, and very precise way to correct disease-causing genes in people and other species. In the last two years, it attracted over $1 billion in venture capital investment, including from the Gates Foundation and Google.

Gene editing has the potential to combat some of humanity’s most entrenched challenges. Genes can be edited to resist HIV infection, kill HIV-infected cells, or kill tumors. Gene editing has already been proven to cure some forms of blindness, though the price tag is still prohibitively high. It could be used to alter entire ecosystems, for instance introducing genes that slowly kill off the mosquitos spreading malaria or Zika. The list goes on and on.

But gene editing technology also has the potential to enhance human capabilities even before a child is born – boosting intelligence, resistance to disease, height, longevity, or muscle strength, for instance. The prospect of ‘designer babies’ is making many people nervous.

Furthermore, the effects of genetic manipulation can span generations. Gene editing techniques can be applied to the two distinct types of genes – inheritable (germline) and non-inheritable (somatic). This distinction is critical to the debate over the technology’s implications. When non-inheritable (somatic) genes are edited, the modifications affect only the organism at hand. But when inheritable genes are edited, the modifications are passed on to subsequent generations.

If left unregulated, gene editing technology could dramatically exacerbate intergenerational inequality.

Parents with means would be able to start their children off in life not only with all the advantages they already have by virtue of their families’ resources, but also with enhanced genetic potential. Meanwhile, poor parents would continue to have no choice but to let nature determine their children’s genetic potential – with all the risks that entails.

 

Where to draw the line?

News of the first gene editing of human embryos unsettled the scientific and ethics community and spurred calls for a moratorium.

At the International Summit on Gene Editing in December 2015, experts agreed that it would be irresponsible to create genetically modified babies – be it to avoid inherited disease or to enhance human capabilities – until the long-term consequences are better understood, and until society can reach consensus about what’s appropriate. This echoed an earlier report from UNESCO’s International Bioethics Committee (IBC), which called on governments to agree to a moratorium on inheritable (germline) gene modification, at least until the safety and efficacy of the procedures can be proven.

At this time, inheritable (germline) gene editing is banned in over 50 countries. UNESCO, the Council of Europe, and the European Union consider germline modification as constituting unethical human experimentation and abuse of human rights. But there is no global policy or regulation in place just yet.

Still, some countries are moving ahead. In early 2015, the United Kingdom approved mitochondrial replacement therapy – a modified in-vitro fertilization (IVF) procedure that seeks to prevent genetic disorders resulting from mutations in mitochondrial DNA. It inserts the prospective parents’ genetic material, minus the mother’s mutated mitochondrial DNA, into a donor egg with healthy mitochondria.

No ‘three-parent babies’ have been born yet, and the technology still has some potentially serious problems for researchers to work out. Meanwhile, the UK also became the first country to allow gene editing in human embryos for early development research. Given the potential health benefits, others are likely to follow suit.

Gene editing technologies are evolving fast, already transforming medicine. This is not a technology that can be stopped, says Dr. Paul Root Wolpe, Director of the Center for Ethics at Emory University and NASA’s first Senior Bioethicist, who debated the issue as part of UNICEF’s Conversations with Thought Leaders series. He urges us to think more deeply through the implications of such genetic engineering – to ensure that it is used ethically and does not jeopardize the rights of the next generation.

There are many questions to consider: Should organizations like UNICEF be involved in shaping the normative debate around the ethics of altering the DNA of today’s and tomorrow’s children? Does the promise of gene editing as a way to tackle non-communicable diseases outweigh the risks – including that it may become a privilege of the few, further exacerbating inequality?

 

Yulia Oleinik is Officer-in-Charge of the Policy Planning Unit in UNICEF’s Division of Data, Research and Policy.

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