the birth of what they described as the world's first "breast-cancer gene-free baby," a designer infant pre-screened for the BRCA1 cancer gene.
A discussion began as to whether screening for preventable diseases ought to be mandatory, at least in the case where the method of in vitro fertilization was being used already.
But mandatory screening is also being discussed as to whether we ought to extend,
the process to all parents-to-be via carrier testing:
All would-be parents should be offered screening to alert them to any genetic disorders they risk passing on to their children. Those at risk should then be offered IVF with pre-implantation genetic diagnosis (IVF-PGD) to ensure any children are healthy.
Opponents of mandatory screening, the Opposing View blog says,
will likely point out that such a rule significantly limits the reproductive autonomy of parents. This is certainly true. However, Western societies have long acknowledged that parental authority cannot undermine the medical interests of a child. Jehovah's Witnesses may not deny their children blood transfusions; Christian Scientists cannot substitute prayer for life-saving antibiotics. As United States Supreme Court Justice Wiley Rutledge wrote in the landmark case of Prince v. Massachusetts, "Parents may be free to become martyrs themselves, but it does not follow that they are free, in identical circumstances, to make martyrs of their children."
But let's add another twist to the discussion, which hasn't been mentioned yet on the blogs I've linked to above. So far we are imagining a procedure in which, with existing and in some cases predicted technology, genetic selection is required of parents in order to keep their children from having diseases preventable with this type of intervention. But recently deaf parents have attempted to genetically select for deaf children (read about one case here). Bioethicists may have thought that parents would first select for superficial traits like eye color or height, or maybe they thought that screening would be used to prevent diminishment of 'quality of life' for the would-be parents would-be children. But the deaf case makes us remember that not every one agrees on what counts as good regarding quality of life.
Both cases involve issues about autonomy, but the deaf case adds another dimension which was not at play before.
The Times article mentions a bill which "would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist."
A coalition of disability organisations will launch a campaign to amend the bill to make it possible for parents to choose the embryos that carry a genetic abnormality.
Francis Murphy, chairman of the British Deaf Association, said: “If choice of embryos for implantation is to be given to citizens in general, and if hearing and other people are allowed to choose embryos that will be ‘like them’, sharing the same characteristics, language and culture, then we believe that deaf people should have the same right.”
What do readers of this blog think? Post a comment.
6 comments:
This issue seems to get at a related problem for medicine, which is that the concept of 'health' is, by nature, impossible to nail down. Is deafness unhealthy because it is abnormal, or is it unhealthy because it interferes with a complete and satisfied life? Do we have any means by which to objectively assess whether or not a congenitally deaf person's life has been the sort of thing their child ought to be legally protected from? Could anyone reasonably choose deafness from behind a veil of ignorance?
There might be things that no reasonable person would will upon his or her self, such as a disease characterized by chronic agony and a short life. However, when we try to prevent the deaf from choosing deaf embryos we might be forced to ask whether a reasonable person would want to be deaf, and such a question is not one we are qualified to answer, since none of us have lived both a deaf life and a life with hearing, and that's the only sort of evidence that would be relevant for this debate.
It seems to me that the only diseases embryos should be screened for are ones that no reasonable person would possibly will upon his or her self. Short, painful lives meet this criterion, but a long, socially fulfilled deaf life might not.
What is strange about this whole issue is that we ignore methods of genetic selection already commonly used today. No one would argue that two deaf individuals should be forbidden from reproducing together, even if there would be a 100% chance of their offspring being deaf. We would, however, object to the individual choosing a "deaf embryo" from among a selection of normal ones. I don't understand why choosing a deaf embryo is more objectionable than choosing a deaf mate to produce a deaf embryo. The intuitions don't match up.
clearly preventable diseases, this promotes a strong genetic selection in life projects, this causes a problem when studying genetic fetus can be removed.
There are many thing that also should be mandatory, but in this case, this has gone too far!
Nature was fine just the way it was, so I wonder how humans dare to even thing to do that.
many as this same question, in my own opinion this disease are the natural population control, in certain time the cells of the human body produce diseases, plagues, bacteries, illness, all this to keep a population valance, all this based in the chromosomal pair 22rd.
If they are gonna make an announce like this, they should be sure because it's not good to make false hopes and less about something like this.
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