Bioethics: Black clouds or age of enlightenment_2?

In a recent  post, I started to discuss how the progress of genetics and medicine, particularly the deciphering of the genome and the prediction of disease or responses to drugs, should seriously shake the members of the Ethics Committee. These progress, first, offer new solutions for better lives, then, new challenges which must be treated in a quite divided society, a legislative context often absurd or even revolting about what the law allows or prohibits, strong injustices according to the degree of knowledge, financial resources, social relations,  and the National Ethics Committee staying consistently behind (far  behind) the demands of society. In this second post, other  stimulating examples.

“Three DNA” babies

Mitochondria are the "power plants" of cells; they have their own DNA, which is passed through the mother. The most common signs of a mitochondrial disease are a myopathy or excessive muscular fatigue, cardiomyopathy, a decrease in vision and hearing, and often also severe neurological signs: encephalopathy, epilepsy, dementia, ataxia... They hit about a newborn on 6500.
In February 2015, the British Parliament approved in vitro fertilization with mitochondrial replacement. When a woman is at risk of transmitting a mitochondrial disease, she can be proposed a fertilization in vitro, with maternal oocytes from only the core has been kept, the oocyte donor, separated from its kernel and containing healthy mitochondria, and sperm from her husband or partner. The child to be born was born will have three biological parents, three different DNAs. David Cameron, (one of his children died at 6 years old) commented the vote: "If science can help (...), we must ensure that these treatments are available"; and, for the Minister of health, it is "the light at the end of a dark tunnel". This treatment is not allowed in France. Ethics beyond the Channel, morally prohibited on the other side ; light beyond, darkness on the other side!

Genetic manipulation on the human embryo

In April 2015, a Chinese team has published the first attempt of gene therapy on a human embryo. It was embryos with a genetic  mutation causing beta Thalassemia (a deficient haemoglobin that can result in severe anaemia). Using the new opportunities of 'genetic edition' , the crispR/case9 techniques (possibility to insert much more specifically a gene at a particular location), Chinese researchers have attempted to replace the mutant by a functional hemoglobin gene. Let say first  that the result was quite disappointing: genetic modification expected occurred in 4 embryos on 54, and insertions have occurred in significant numbers in other parts of the genome. The Chinese team recognize: the technique is far from being mature enough to consider therapeutic human cloning. In this case, it was only an experiment on unviable  human embryos, from an IVF attempt, intended for research, with consent of the donors, and without intent of go to birth.

However, these manipulations on the human embryo are prohibited in almost all Western countries, and a number of researchers have called for a moratorium on this type of research in Nature... not even a month before the publication of the Chinese study (refused by some major scientific journals). Clearly, this moratorium cannot stand - apart from being inefficient, it is even ethical ? Research will continue in the West or elsewhere and, probably one day, the technique will correct very reliably a mutation in a human embryo. Will we consider the baby that is born to be a clone (horror?), or simply a cured baby (great!)?

There again, the scientific community is shared. Nicole Le Douarin, Pr at the College de Franceis  rather supportive : "I'm for progress, not to fear. Do not dismiss this technique, because it can have very interesting applications, provided that they are strictly supervised. Imagine that this could allow in the future to eradicate a monogenic disease like cystic fibrosis... "(Science et avenir, June 2015). Axel Kahn  spoked  of  " fame for media” and “symbolic of the forbidden and the scandalous"  and precised "there is a much easier and safe way to allow the birth of a healthy child: prenatal diagnosis or preimplantation, with elimination of embryos carrying a genetic defect”. Declarations of past  or present members of the National Consultative Ethics Committee startling me more and more. On behalf of what, instead of who  dopes he have the right to decide that the elimination of defective embryos is more ethical than looking for techniques to treat them?

Preimplantation genetic diagnosis (selection of embryos) for breast cancer

For the first time in France, a couple whose wife carries the BRCA1 mutation, predisposing them to breast (risk multiplied by 4-6) and ovarian (risk multiplied by 10 to 50) was authorized to take a preimplantation genetic diagnosis, so as to ensure that the child born by IVF will not be affected. This had already been accepted for other cancers where genetic determinism is even more important (retinoblastoma, Li Fraumeni) . This process is authorized since 2009 in England (gain, the Channel as ethical barrier!); In France, so far, all applications had been denied (by whom, in what name?). A 2008 report recommended for BRCA1 and A2 genes not to propose a pre implantation diagnosis, except in some cases "where demand would similarly admissible» (by whom, in what name?)." Onco geneticist Pascal Pujol speaks "of an incredible subjectivity" (Le Monde, mercredi17 June 2015). And if one accepts the possible use of preimplantation diagnosis, I see no reason to deny freedom of BRCA1 testing, as proposed, for example,by  23andme. In short, when France moves in this area, it is in arbitrariness and injustice.

Yes, it really is time that the National Consultative Ethics Committee starts to work - the arbitrary and unjust are accumulating. It is time also to put in the foreground the will of patients and society in general; to listen a little less those who, for religious reasons or by medical routine, thrive well of a humanity which should for ever a suffering humanity. The positivist I am would consider ethics, very simply, as any sufficiently safe technique which can alleviate people’s woe…