Genetic Future

i-d7f8ada777c2dc760a9d83c6515aa798-blastomere_biopsy_PGD.jpgOver at Opposing Views, bioethicist Jacob Appel argues that pre-implantation genetic screening for severe disease mutations should be compulsory for parents undergoing IVF.

Appell dodges one obvious criticism of this suggestion – that it unacceptably limits parental autonomy – by pointing out that “Western societies have long acknowledged that parental authority cannot undermine the medical interests of a child”. As examples, Appell cites the facts that Jehovah’s Witnesses cannot deny their own children blood transfusions, however strong their religious opposition, and that “American courts consistently compel pediatric cancer therapy, even when parents object”.

Given these precedents, Appell argues that allowing children to be brought into the world with a severe genetic disease, when this situation could be easily avoided with large-scale genetic screening, is morally indefensible and analogous to child abuse.

I’m wary of any argument that violates parental autonomy – but Appell’s argument certainly seems consistent with emerging Western values weighing child protection above parental choice (so long, of course, as such protection does not extend to embryos).

I actually suspect that top-down coercion will not ultimately be required to enforce embryo screening for severe diseases, however – social pressure will be a far more effective tool.

Once pre-natal screening for severe disease (both through IVF embryo testing and maternal blood testing) becomes effective and cheap, parents of disabled children will be increasingly viewed by society as being responsible for their child’s disease. Social ostracism will always trump legality as an incentive to change moral values.

Whether you see such a world as right or wrong will of course depend on your political and religious beliefs, but I really can’t see how these changes can be avoided; they are an inevitable consequence of advances in genetic technology coupled with human nature. In other words: like it or not, genetic diseases like cystic fibrosis and muscular dystrophy will almost certainly be little more than historical curiosities within a decade or two.

I must admit that I find it hard to view this prospect with anything approaching sadness.

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Comments

  1. #1 jon
    March 6, 2009

    I actually suspect that top-down coercion will not ultimately be required to enforce embryo screening for severe diseases, however – social pressure will be a far more effective tool.

    I’m not sure I entirely agree, simply because there is already social stigma attached to denying children blood transfusions or chemo (and rightly so!), but the courts are still required to step in periodically. If religious belief can trump desire to see one’s child live, it can also trump social pressure.

  2. #2 Elena
    March 6, 2009

    [anectotalEvidence]
    I’ve been hanging out on pregnancy forums for a few months (for, um, the most likely reason), and I’ve noticed a trend for reverse social pressure against screening powered by the view that “the only reason to get triple/quad screening or genetic testing is if you want to kill your baaaaby if it is a little bit imperfect.
    As someone who has done a termination for medical reasons [anencephaly], I get reeeally annoyed when people go into “I would never do screening and neither should you” mode.
    [/anecdotalEvidence]

  3. #3 Elena
    March 6, 2009

    The previous comment was supposed to go under the “anecdotal evidence” section; didn’t realize HTML-like code would be taken seriously…

  4. #4 catgirl
    March 6, 2009

    Yeah, I think that the big issue here is abortion. What if an embryo was tested and had the genes for a terrible disease, but the parents wanted to have it anyway? If genetic testing were mandatory, would it also be made illegal to implant the diseased embryo?

    On top of that, most people do not reproduce via IFV, and I doubt we will ever reach a point where most or all women are willing to terminate a pregnancy of a severely disabled reason, and that is their choice to make.

  5. #5 Christena Lundy
    March 6, 2009

    My daughter lost a child to Trisomy 18. Months later she underwent the protocol for Artificial Insemination. Pre pregnancy testing was extensive, and at 10 weeks into the pregnancy she had CVS (chorionic villi sampling). The results were that she was bearing an apparently normal baby boy. She cried her heart out. Or should she have rolled the dice? Thank you Elena for your annoyance. Chris

  6. #6 Jerry Jones
    March 7, 2009

    Readers should not be confused by the above poor wording regarding Jehovah’s Witnesses alleged inability to keep their children from receiving blood transfusions needed to save their lives.

    In fact, Jehovah’s Witness Parents continue to make every effort to deny their children life-saving blood transfusions.

    In emergency situations, the refusal of JW Parents to consent to blood transfusions needed by their dying children forces hospitals to seek time-consuming court intervention. All too often, the child dies while the legal process takes its course.

    There are also a smattering of hospitals and doctors which quietly cooperate with JW Parents in denying their children necessary blood transfusions. If a hospital chooses not to seek court intervention, then the matter never reaches the courts.

    In non-emergency situations, JW Parents have even been successful in some state’s courts which allow teenaged JW children to refuse life-saving blood transfusions via the so-called “mature minor” rule.

    This issue is fully covered at:

    DIVORCE, BLOOD TRANSFUSIONS, AND OTHER LEGAL ISSUES AFFECTING CHILDREN OF JEHOVAH’S WITNESSES

    http://jwdivorces.bravehost.com

  7. #7 Jan Wade
    March 7, 2009

    Jerry Jones is either ill-informed or deliberately distorting the facts. I have worked in hospitals for over sixteen years and here are some facts regarding Jehovah’s Witnesses, their children and blood transfusions.

    The United States Supreme Court has held that a doctor can give a “life saving” blood transfusion to minors who are below the age of consent regardless of their parent’s opinion. This means that hospitals do not need to obtain a court order to transfuse blood in cases the physician deems “life saving”. Many hospitals will obtain a court order with the involvement of parents in order to define how long this treatment should continue. Emotions on both sides of the issue often run high in these cases so having the court give an opinion is very useful and is not a burden. It is actually a valuable part of the judicial process. Doctors are not infallible and they do have personal opinions that might work against their patient’s rights and beliefs…isn’t that true? In cases where blood transfusions would be convenient i.e. allow the patient to leave the hospital sooner the parents right to chose is respected.

    The Jehovah’s Witness position on blood transfusions is not a hazy fanatical doctrine but is based on clear Biblical direction:

    (Genesis 9:3-4) 3 Every moving animal that is alive may serve as food for YOU. As in the case of green vegetation, I do give it all to YOU. 4 Only flesh with its soul—its blood—YOU must not eat.

    (Leviticus 17:14) 14 For the soul of every sort of flesh is its blood by the soul in it. Consequently I said to the sons of Israel: “YOU must not eat the blood of any sort of flesh, because the soul of every sort of flesh is its blood. Anyone eating it will be cut off.”

    (Acts 15:28-29) . . ., 29 to keep abstaining from things sacrificed to idols and from blood and from things strangled and from fornication. If YOU carefully keep yourselves from these things, YOU will prosper. Good health to YOU!”

    Israelites would not eat blood. Early followers of Jesus Christ (Christians) would rather die than eat blood.

    One may want to debate the issue of what constitutes “eating” blood. If you do consider this illustration: An alcoholic is told by his doctor that he can NOT drink alcohol. Might he then transfuse alcohol directly into his blood stream? Hardly!

    As to the “smattering of hospitals and doctors which quietly cooperate with JW parents”?? Ludicrous positioning. There are hundreds of medical centers in the United States that have created formal blood management or bloodless programs where they offer most medical treatments without using blood transfusions. Some of the “quiet” centers include – Duke Medical Center, University of Pennsylvania Medical Center – Philadelphia, Englewood Medical Center – Englewood New Jersey, USC Medical Center – Los Angeles, Swedish Medical Center – Seattle, Saint Agnes Hospital – Fresno, Rainbow Children’s – Cleveland, Centrals California Children’s – Fresno…the list goes on to include hospitals in: San Diego, Miami, Jacksonville, Tacoma, Portland, Huston, Dallas, San Francisco, Omaha, Birmingham, Atlanta, Las Vegas, Chicago, Indianapolis, San Luis Obispo. There are hundreds of formal bloodless programs in the United States and an equal number worldwide. All of them are very public about offering what most claim as the “gold standard” of medical treatment.

    I hope this helps to clarify this issue.

    http://www.noblood.org (more information)

  8. #8 Cathy James
    March 8, 2009

    Starting in 1945, the WatchTower Society has since refused to permit Jehovah’s Witnesses to accept blood transfusions. Misinterpreting the Old Testament prohibition against eating animal blood as a routine food item, the WatchTower Society began teaching in 1945 that receiving a blood transfusion was “eating human blood”. Jehovah’s Witnesses believe that receiving an infusion of human blood into their body’s circulatory system is scientifically the exact same thing as eating or ingesting blood into their body’s digestive system.
    “A patient in the hospital maybe fed through the mouth, through the nose, or through the veins. When sugar solutions are given intravenously it is called intravenous feeding. So the hospital’s own terminology recognizes as feeding the process of putting nutrition into one’s system via the veins. Hence the attendant administering the transfusion is feeding the patient through the veins, and the patient receiving it is eating through his veins.” — The WATCHTOWER magazine, July 1, 1951.

    Jehovah’s Witnesses refuse to acknowledge that when human blood is transfused into their body’s circulatory system that the transfused human blood remains to be human blood and continues to function as human blood. Jehovah’s Witnesses refuse to acknowledge that if blood is eaten, then the ingested blood enters the body’s digestive system, where the blood would be treated by the body exactly the same as it would treat a hotdog, a potato chip, or any other food item. Ingested blood would be completely digested and broken down into proteins, carbohydrates, fats, and waste; which are then either assimilated or excreted by the body.

    The WatchTower Society uses scriptures which speak about the blood of slaughtered animals to teach Jehovah’s Witnesses that blood is “sacred” because blood is the “symbol of life”. Then, the WatchTower Society turns around and requires Jehovah’s Witnesses to sacrifice their own “life” to maintain the alleged “sacredness” of a “symbol” of the very thing they are sacrificing — their life. Jehovah’s Witnesses refuse to acknowledge that the WatchTower doctrine on blood moronically places a higher value on the SYMBOL than it does on the THING SYMBOLIZED.

    In fact, the Old Testament scriptures permitted the eating of unbled animal meat, which the Bible equates as eating animal blood directly. In isolated occasions, when humans needed to eat unbled meat in order to sustain their own human life, the Mosaic Law permitted such, but then required the eaters to fulfill the requirements of being “unclean” for a few days. Thus, the Bible recognized that the sustaining of human life was more “sacred” than maintaining the sacredness of animal blood. To do otherwise would be doing exactly what the moronic WatchTower Society does. It would make the SYMBOL more SACRED than the THING SYMBOLIZED.

    In fact, the WatchTower Society is leading Jehovah’s Witnesses to disobey GOD and violate the Holy Scriptures in one of the most serious ways possible. Because humans were created in GOD’s image, GOD considers human life sacred. A Jehovah’s Witness who sacrifices their SACRED LIFE in order to maintain the sacredness of a SYMBOL of that SACRED LIFE varies little from those who profane life by committing suicide. Those Jehovah’s Witness Elders who teach and police this moronic doctrine vary little from common accessories to murder. The Bible is fairly clear in how GOD views murder, and how He deals with murderers.

    This moronic twisting of scripture would be laughable if not for the fact that it has lead to the pointless deaths of numerous Jehovah’s Witnesses in the past, and it will continue to lead to the pointless deaths of many more Jehovah’s Witnesses in the future.

  9. #9 Marieelena Mathena
    March 9, 2009

    If you really want to read the Truth for yourself go to http://www.noblood.org (more information) as Jan Wade refers to and as to the Bible belief surrounding the command go to http://www.watchtower.org. You can get it straight from the “horses mouth” so to speak.

  10. #10 Brenda
    March 9, 2009

    Jehovah’s Witnesses and no blood transfusions quickie FAQ.

    Modified Kosher dogma appeared circa 1945 when the “Christian” JW back then (a fraction of the membership they are in 2009) thought the world was coming to an end any day.

    This is the key,the leadership back then never thought that they would ‘still be here in this ole system’ in the 21st century.The end of the world was suppose to come a long time ago.
    So what has happened since is thousands of men,women and CHILDREN have perished for this made up rule,and now the Watchtower legal dept has got to spin this so they don’t get sued for wrongful death.

    Soooo, they invented the fraction loop hole where in the fine print JW actually can really take blood to save their live but just can’t call it whole blood.

    Complicated? That’s the idea so that a jury would think so.
    Watchtower don’t get sued for money and JW children can still die.If the Watchtower legal could find a way to squirm outta this mess they would fold faster than superman doing laundry.

    JW BLOOD REFORM NOW!
    http://www.ajwrb.org/basics/abstain.shtml

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