• WHO Forms Human Gene-Editing Committee To Establish Guidelines : Shots - Health News : NPR

    Voici le topo :
    – des « scientifiques » voyous manipulent génétiquement des embryons humains
    – la « communauté » scientifique crie au non respect de règles éthiques (et signale qu’il est « un peu tôt » pour se servir de la technique CRISPR qu’on maîtrise encore mal)
    – donc on crée une commission à l’OMS pour « encadrer l’usage futur »
    – donc, c’est comme si c’était déjà en cours, qu’il n’y avait ni interdiction, ni moratoire, juste le besoin de règles
    – et comme les règles vont prendre du temps, les autres « scientifiques » voyous vont « pratiquer » car il faut bien « expérimenter » pour définir l’éthique, n’est-ce pas ?

    En ne se prononçant jamais pour des interdictions ou des moratoires, les instances internationales laissent les entreprises/savants fous définir les règles. On retrouve le même processus en géoengineering, sur les manipulations génétiques des plantes alimentaires, sur les plantes phosphorescentes, sur la biologie de synthèse... Ce n’est au fond que la validation par les instances publiques multilatérales des fameuses « conférences d’Asilomar » dont le but était de laisser les entreprises d’un secteur définir les règles éthiques et environnementales qui s’appliqueront à ce secteur. C’est Facebook qui définit l’éthique des médias sociaux et les Sackler celle de la pharmacie des antidouleur.

    Bienvenue dans le monde de demain.

    The World Health Organization Thursday announced the formation of an international committee aimed at establishing uniform guidelines for editing human DNA in ways that can be passed down to future generations.

    The 18-member committee “will examine the scientific, ethical, social and legal challenges associated with human genome editing,” according to the WHO announcement.

    “The aim will be to advise and make recommendations on appropriate governance mechanisms for human genome editing,” the WHO says.

    The committee’s formation was prompted by the disclosure last year by Chinese scientist He Jiankui that he had created the world’s first gene-edited babies, twin girls.

    That sparked international outrage. Scientists, bioethicists and advocates condemned the experiment as unethical and irresponsible.

    But many scientists think it may be ethical someday to use the powerful new gene-editing technique known as CRISPR to edit the DNA in human embryos to prevent genetic disorders.

    Nevertheless, most scientists say it’s far too early to try to create babies that way since it’s unclear how well CRISPR works to edit DNA in a human embryo and whether it’s safe.

    #Designer_babies #CRISPR #Manipulation_génétique #Ethique

  • The controversial case of a rogue scientist responsible for the world’s the first gene-edited babies | Alternet

    Public perception

    This backlash may have caught He by surprise. According to one report, He commissioned a large-scale public opinion survey in China a few months prior to the announcement. The survey found that over 70 percent of the Chinese public was supportive of using gene editing for HIV prevention. This is roughly in line with a recent Pew poll in the United States that found 60 percent of Americans support using gene editing on babies to reduce lifetime risk of contracting certain diseases.
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    But polling tells only part of the story. The same Chinese poll also found very low levels of public understanding of gene editing and did not mention the details of He’s study. Abstract polling questions ignore the risks and state of the science, which were crucial to most objections to He’s experiment. It also obscures the involvement of embryos in gene editing. In the American Pew poll, despite overall support for gene editing, 65 percent opposed embryonic testing – a necessary step in the process of gene editing to address disease.

    Moreover, polling is a crude and simplistic way to engage in public debate and deliberation over the controversial issue of gene editing. Various bodies, such as the National Academies of Sciences, Medicine and Engineering in the U.S. and the Nuffield Council on Bioethics in the U.K., have emphasized that, for gene editing to proceed to human trials, a robust public discussion is first needed to establish its legitimacy.

    But looking a little closer reveals other, more problematic motivations.

    For such couples, it is possible to safely conceive an HIV-negative child using robust IVF procedures. Such therapy is expensive, prohibitively so for many couples. But He’s study offered a particularly enticing carrot – free IVF treatment and supportive care, along with a daily allowance and insurance coverage during the treatment and pregnancy. According to the consent form, the total value of treatments and payments was approximately US$40,000 – over four times the average annual wage in urban China.

    This raises a serious concern of undue inducement: paying research participants such a large sum that it distorts their assessment of the risks and benefits. In this gene editing context, where the risks are incredibly uncertain and there is substantially limited general understanding of genetics and gene editing, society should be especially concerned about the distorting effect of such a large reward on the participants’ provision of free and informed consent.

    #Gene_editing #Designer_babies #Ethique

  • Human Gene Editing Receives Science Panel’s Support - The New York Times

    An influential science advisory group formed by the National Academy of Sciences and the National Academy of Medicine on Tuesday lent its support to a once-unthinkable proposition: clinical efforts to engineer humans with inheritable genetic traits.

    Toujours les mêmes arguments de l’auto-régulation des chercheurs tout en reconnaissant qu’ils sont engagés dans une course de vitesse avec « les chinois ».

    #santé_publique #génétique #asilomar_model #designer_babies