Designer Babies?

Editing genes to cure disease

Dr Derrick Aarons

Sunday, May 24, 2015

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ON April 18, 2015, a group of Chinese scientists announced they had edited the DNA of 80 fertilised (but
non-viable) eggs.

Their aim was to eliminate what is termed "a recessive sequence of code" that causes beta thalassemia, a type of anaemia that requires sufferers to get lifelong blood transfusions. This caught many scientists and the public by surprise, although some biologists had been forewarning of the possibility for some time.

Medical breakthrough of the century

Many people think that this new technology has the potential to change the future of the human race. Beta thalassemia is only one of many inherited disorders that gene editing could correct. The technique could not only eradicate thousands of diseases, such as Alzheimer's, diabetes or even cystic fibrosis, but can also make many current pharmacological treatments obsolete.

This would usher in a new epoch of health care.

Some people, however, argue that science needs room to figure out exactly what this new technology is capable of doing. Many researchers see great possibilities, but are not in agreement about how far each potential may go. Figuring out the efficacy and safety of embryonic gene editing will take several years of research.

Further, although some of these diseases trace back to mutations in a single gene (like beta thalassemia does), any editing could also have unforeseen consequences. Hence, whilst scientists are the most knowledgeable at the technical level of the matter, many think that society should be telling scientists just how far it is comfortable with them taking their technical expertise. On the other hand, the biggest fear of many scientists is that average citizens, and the governments that serve them, will make the rules about gene editing without balancing and thinking things through.

Educating the public

Many scientists had wished for a temporary halt on the research technique in order to educate the public on all the potential consequences of gene editing, as well as all the safety and efficacy benchmarks that researchers needed to meet before they begin researching human embryo gene editing. In other words, since this is still an incredibly young area of science, then long before we ask the question of 'Ought we to?', we should know the answers to 'What can we do?' and 'Is it safe?'

On the other hand, some say that poorly conceived policies have inhibited beneficial science progress and even led science astray before. For instance, during the 1990s, embryonic stem cell research got caught up in the great debates about abortion in the USA. Ideologues on both sides of the issue ripped into each other so severely over a protracted period that eventually no common ground could be found for any reasonable discussion. The result was the Dickey-Wicker Amendment in the USA, which mandated that no research on embryonic stem cells could be done using federal research dollars.

With the National Institutes of Health in the USA announcing on April 29, 2015 that none of its agency's federally allocated money would be provided to scientists doing research with the DNA in a human zygote, a resurgence of fear regarding short-sighted and fragmented legislation has recurred in many scientists. They see the hope of eradicating most of the so-called 'inhumane heritable diseases' being eliminated, as the policy could affect other types of gene editing that have nothing to do with unborn babies.

Fear of the unknown

Some scientists point out that ever since in-vitro fertilisation made it possible for parents to select embryos with the best genetics, precisely engineered progeny
(off-springs or descendants) has become a big fear. Now that a powerful gene-editing technique has been used on human embryos, it is likely to produce pervasive fear of medical mutants with genetic mistakes that will be passed on for generations, and armies of super soldiers with genetically engineered immunity to arsenals of chemical and biological weapons.

Some stem cell biologists state that there is still a lot to be concerned about, since even after years of perfecting techniques on bacteria and other model organism DNA, side effects are always possible. So, even if all went perfectly, an edit of a gene might change something else, like an expression of some nearby gene, or influence non-genetic conditions. Further, the gene-editing technology might create injustice, whereby if the law permits gene editing only to remove harmful DNA, the technique might only be accessible to the financially privileged.

So, should we be afraid, or hopeful? The first crucial step in the process is to become educated. We should avoid the hype on either side of the issue in the news media and elsewhere, and begin our discussion of this crucial discovery and new ability. We need to take a good, detailed look at both the real risks and beneficial possibilities of human gene editing.

Derrick Aarons MD, PhD, is a consultant bioethicist/family physician, a specialist in ethical issues in medicine, the life sciences and research, and is the ethicist at the Caribbean Public Health Agency -- CARPHA. (The views expressed here are not written on behalf of CARPHA)


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