The Child Right International Network (CRIN) states:
"everyone, including children, has the right to autonomy and self-determination over their own body, and the only person with the right to make a decision about one’s body is oneself”
The right to self-determination of the child would be undermined by modifying the genome in order to fulfil parental expectations backed by societal values and norms. Certain genetic conditions would be preferred. Being born wouldn't be left to chance.
Do we have the right to use CRISPR technologies to design our babies according to our preferences, even if well-intentioned ?
Gene editing seems to be focussed on preventing grave diseases, yet we are not being able to forsee all the consequences of that technique.
Furthermore we could start to make genetic changes for the enhancement of our children, to design the babies we want.
We need to become aware of it, that there is the possibility of the creation of genetically modified human beings, but do we want this?
Prospective parents may have an interest in HHGE, when their prospective children might be with a genetic disease. They wish for genetically related children who are unaffected by that disease.
Parents would want to make sure that their child isn't having that genetic disease. Hence they would make use of parents' right of reproductive liberty. They would want to undergo this medical procedure to enhance their child genetic trait. They would make decisions for their unborn child, as the child wouldn't be able to make them themselves at this point. What about the autonomy of the child?
Couldn't we suppose that parents have the duty to protect their child against uncertain experimental technique of HHGE?
Is the person, having undergone HHGE, still autonomous?
The parents make the decision for the child. That would mean, that the principles of informed consent isn't applied here, because the child, about whom it is, isn't able to give consent at this point. Isn't the right to freedom of the child infringed?
Doesn't the parents' right of reproductive liberty correspond to parental duty to perfect children?
The CRISPR Journal (after Dr. He's breach of Bioethical Norms)
Dr. He Jiankui published his seminal paper, in which he announced that he had created the world's first gene-edited babies. This paper was published in the CRISPR Journal.
The Editor however replaced Dr. HE's paper with a short report instead, where he argued that seven million children with lethal or debilitating genetic diseases are born, who could be treated by Genome Editing, which called "gene surgery".
He outlined five core principles, where he could envisaged "gene surgery" in human embryos being morally permissable:
For compassionate reasons (families with medical needs)
For serious disease only, never for aesthetic enhancement
A child's autonomy is always to be respected
Genes do not define who you are
Everyone deserves freedom from genetic disease
What does this mean?
For compassionate reasons: Who get's to decide which families receive treament? What constitutes genuine need? Where does it begin?
For serious disease only, never for aesthetic enhancement: Where does enhancement fit in?
Respect a child's autonomy: Isn't the child's autonomy undermined for exactly this reason, that the decision is made for the child?
Genes do not define you: Inequality tells another tale.
Everyone deserves freedom from genetic disease: Who knows whether the clinical application of HHGE will really result in "freedom from genetic disease"? Isn't that a cheep slogan?
Don't points 4. and 5. contradict each other? Principle 4. is at odds with principle 5.