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Monday, November 3, 2014

Preventing genetic disease, not killing those with genetic diseases


I've mentioned once or twice before that I'm an alumna of the University of Miami. On Saturday, I attended Miami's homecoming game against UNC, and while the football was great (and we won), what really made it special was an appearance by Jim Kelly. Kelly was a star quarterback for the University of Miami in the early 1980s and for the Buffalo Bills until 1996. Since most SPL supporters are young and this may be before your time, allow me to share a word or two about why Jim Kelly is amazing. It has nothing to do with his skill on the field, and everything to do with his life-saving advocacy with Hunter's Hope Foundation.

Jim's son, Hunter, had a rare genetic disorder called Krabbe's disease:
At first, Hunter seemed to be a perfectly healthy infant. However, in the weeks that followed, he grew extremely irritable, and as things grew worse, the Kellys sought answers to relieve their son’s pain. After an exhaustive battery of tests, a leading pediatric neurologist, Dr. Patricia Duffner, shared the devastating news: 
“Your son has been diagnosed with a fatal genetic disease called Krabbe Leukodystrophy. There is no treatment for the disease and no cure. The average life expectancy for babies diagnosed with infantile Krabbe is fourteen months. Hunter will probably not live to see his second birthday. We can help you make your son more comfortable but…”
Hunter did exceed the life expectancy Dr. Duffner predicted, but his life was still tragically short: he passed away at the age of 8. During his short life, he was profoundly disabled.

The Kellys founded Hunter's Hope to fund research into the possible treatments and cures that were unknown when Hunter was diagnosed. Too often, work on lethal genetic disorders is focused not on curing the disease, but on developing prenatal tests so that those afflicted with the disease can be aborted (ostensibly to spare them suffering). But the Kellys—who I should, in all fairness, acknowledge are devout Christians—did not take that approach.

And in fact, a cure has emerged for Krabbe's disease: umbilical cord blood from a healthy baby is transplanted into the affected child. But an umbilical cord blood transplant only works if done early, before the person with Krabbe's disease is symptomatic. Therefore, Hunter's Hope does advocate for testing: but in newborns, not in the preborn.

In a similar vein, I'm reminded of Dor Yeshorim, which seeks to prevent the occurrence of genetic diseases in Jewish populations. Again, they do so in a life-affirming way, not through prenatal "search and destroy" missions. Instead, they screen dating couples through a rather ingenious system that preserves anonymity:
When two members of the system contemplate marriage, they contact the organization and enter both their PINs. When both carry a gene for the same disorder, the risk of affected offspring is 25%, and it is considered advisable to discontinue the plans. In the context of shidduchim, the "carriership check" is often run within the first three dates, to avoid disappointments and heartbreak. Ideally, it should be checked prior to the first date, as there are no charges applied to any particular query. Some couples wait until the third through fifth date because of the perception that participants go on too many first dates to make a pre-first date query viable and asking for a check after a first date indicates that the requester is over enthusiastic about the match. 
The pro-life community should do what we can to support innovative, non-abortive approaches to genetic disease like those taken by Hunter's Hope and Dor Yesharim. There is a critical difference between preventing genetic disease, and killing those who have genetic diseases. The former should be something we all can agree on.

12 comments:

secularprolife.org said...

I so agree! I love hearing about people working together FOR life and not against it.

secularprolife.org said...

Its great what Jim Kelly has done, and he did in fact raise awareness of Krabbe's disease in at least one person: myself. Never heard of it until now. While it seems the first paper describing the cure for the disease did not originate from the institute he founded at SUNY Buffalo, Hunter's Hope Foundation has funded at least one of the leading investigators, and the foundation also contributed patient data to the study. For this, he has my full admiration.

But then you say

>> Too often, work on lethal genetic disorders is focused not on curing the disease, but on developing prenatal tests so that those afflicted with the disease can be aborted (ostensibly to spare them suffering).

Really? I am honestly and naively asking this question. Kelsey, are you saying that most biomedical researchers out there are just throwing in the towel and saying they give up? Screening and aborting is the only cure, and most investigators in the biomedical field have resigned to this bleak outlook?

>> But the Kellys—who I should, in all fairness, acknowledge are devout Christians—did not take that approach.

While they did FUND some (or much?, I don't know, NIH was also listed in the acknowledgements) of the recent research on Krabbe's disease, they were not the scientists who actually did the research. You make it sound like the pro-life are the only ones concerned about saving lives here, but as you have acknowledged yourself, being pro-choice highly correlates with your level of education and scientists and those with post-graduate degrees are VERY likely to be pro-choice. While it is admirable that Jim Kelly set up the foundations and the funds, the bulk of the science foot soldiers are likely to be pro-choice. Also, science doesn't exist in a vacuum. Every scientist stands on the shoulder of giants, and the techniques and methods employed to combat Krabbe's disease likely benefitted from the tireless work of many many pro-choice scientists.

I don't want to politicize this too much, but while this is one instance of a pro-lifer doing positive things for scientific advancement, the mainstream pro-life movement IS strongly tied to the conservative movement, and those anti-science, anti-intellectual current poisoning American society. Too many mainstream pro-lifers are also evolution and climate change deniers, anti-birth control activists, etc. While it is great what this one pro-lifer did, if mainstream prolifers had their way, we are likely to head towards the dark ages where we can only resort to pray for a cure.

Also, pro-choice scientists are not anti-life, as another commenter rather dimwittedly commented a particularly lame sound bite on this thread.

secularprolife.org said...

Well said.

secularprolife.org said...

**There is a critical difference between preventing genetic disease, and killing those who have genetic diseases. The former should be something we all can agree on.**


I'm sure we all do agree that would be *nice*. But in the meantime, we don't live in fairyland, the candyman hasn't come with the cure for genetic diseases, and the continual use of the word (sob) 'killing' has become pretty meaningless. I 'kill' human cells every time I exercise or scratch my skin. It requires something more than human DNA and pretended sad feelies for that to have any actual moral meaning.

secularprolife.org said...

It's a real shame that prolifers cannot celebrate what is inarguably good news (a lethal painful childhood disease can be cured) without needing to malign women.

A pregnant woman faced with the news that if her baby is born, s/he will die in pain within hours - or even weeks or months - has a heartwrenching, painful decision to make, which will be based on a vast number of factors personal to her and to her family, as well as major ethical choices about the*right* thing to do for herself and for the potential baby. It's a decision only the pregnant woman can make, to abort or to continue the pregnancy, and whichever way she decides is the right thing to do, any decent person would agree that she deserves support and lovingkindness.

Not so prolifers, who want to take away a pregnant woman's right to make that decision and whose reaction to a woman who decides to abort is to taunt her with spiteful abuse about how when she decided to terminate her pregnancy she was killing her baby.

The discovery of a cure for a very painful disease is a very splendid thing. Why crap it up with spiteful abuse?

secularprolife.org said...

that's nice. And in the meantime, they have still not actually cured genetic disease, and we don't live in fairyland.

secularprolife.org said...

Abortion by nature kills a human being. "Killing" is to end a life. Whatever the reason, that's what it happening.I'm not sure what "abuse" you are specifically referring to, but merely stating facts is not abuse. If someone takes issue with the facts, that's on them. I don't however advocate actual abuse, physical or verbal.

There is no such thing as a 'potential" baby. "Baby" by common dictionary definition (a tool used in most educational facilities) is synonymous with "child" which means a young immature human being. A human being under the age of one certainly qualifies as immature. (citations at bottom)

I don't doubt that some people think that "mercy killing' is the right thing to do. However their child's (their as in being related too) life is not there's to take. Everyone should be entitled to their own life and to make of it what they wish.

I also believe many use it as an excuse because they want a 'perfect' child and are simply incapable of 'loving' anything less. So they just want to throw away the defective one and start over.

It's also an undignified thing to do to someone. Cut them up and throw them away instead of proper burial or cremation? That doesn't sound like love to me or compassion.

I'm sure it's devastating to find out your baby has a lethal health condition-or any health condition. But A. Most things are not set in stone , so how is it right to take away someone's chance at beating the odds and living a happy life, no matter how long or short? And B. Why wouldn't you opt to make your child as comfortable as possible and spend time with them, as opposed to treating them like garbage?

You can try and romanticize mercy killing all you want, but its' still killing.

Sources
http://www.merriam-webster.com/dictionary/baby
http://www.merriam-webster.com/dictionary/child
Also can be found in many other online dictionaries such as the Oxford Dictionary and The Free Dictionary. (A Google search should bring these up)

secularprolife.org said...

The word "kill" or any variation isn't devoid of meaning. You are exactly right that you tear and probably subsequently kill cells doing common things. It's actually refreshing to see someone acknowledge that we are talking about killing living organisms actually.

Perhaps someone merely being 'human' isn't enough for some people to care whether they live or die,but to many others it is. It's why we have a debate about it.

It's a biological fact that human beings exist AS human beings the moment they are created at fertilization. It just seems like many people either don't understand this or are so taken in awe by the wonders of science and fetal/human development that they shun these humans since they don't look like 'the finished product' so to speak.

But, neither do born babies. We aren't finished developing unitll we reach maturity. Then our DNA starts to break down and what we refer to as the 'aging process' begins.

Since we are often in a state of continues development, it doesn't really make sense to discriminate against someone in a phase of there's. If you are saying it's not immoral to kill a human being in their fetal stage, you have to concede that it's not immoral to kill a human being in their adolescent stage, or born infant stage either. Is that what you are implying?

Another way of interpering your post would be simply to state morals don't or shouldn't apply ever. If it's not immoral to kill a pre born human, why would it be so to kill a born one since they are both human?

I think your post is a good springboard for a philosophical debate. Morals are a personal thing, yet all our laws are rooted in general beliefs of right and wrong.

So, if being human isn't enough, what would it take for you to be sympathetic toward preborn humans being killed?

secularprolife.org said...

Denial of access to safe legal abortion kills at least tens of thousands of human beings each year, all over the world. Whatever the reason, that's what the prolife movement does, with the faux-justification that they don't support killing, As I've noted elsewhere, prolifers don't even support life-saving abortions.

There is no such thing as a 'potential" baby.

Well, technically, you're right. Human development begins with conceptus, zygote, embryo, fetus, and then baby, child, teenager, adult. However, a woman who is already thinking of the embryo or fetus she is pregnant with as her "baby" has a right to think of it this way, even though the embryo / fetus is actually only a potential baby: babyhood begins at birth.

I also believe many use it as an excuse because they want a 'perfect' child and are simply incapable of 'loving' anything less. So they just want to throw away the defective one and start over.

Yeah. prolifers tend to believe horrible things of women. You're part of an intrinsically misogynistic movement.

It's also an undignified thing to do to someone. Cut them up and throw them away instead of proper burial or cremation? That doesn't sound like love to me or compassion.

That's because prolifers feel neither love nor compassion for women who find that the fetus has a lethal disease that will kill them either before or shortly after birth. And of course prolifers take care to stay well away from women who go through this traumatic experience, and so don't ever read any personal stories from women who made this decision.

A fetus that dies inside a woman's uterus presents an immediate health risk to her: of course, that's a matter of indifference to prolifers.

But A. Most things are not set in stone , so how is it right to take away someone's chance at beating the odds and living a happy life, no matter how long or short?


Because life doesn't work like that sometimes? I know prolifers like to live in a happy little bubble where it doesn't turn out that the fetus has an exposed spine and missing skull and if allowed to born will live a short life of inexplicable agony, but these things do happen. You don't like to think of babies dying over days or hours in agony so you just close your eyes and pretend it doesn't happen. But a woman faced with this prospect can't close her eyes: she has to decide. This decision is what prolifers find intolerable.


And B. Why wouldn't you opt to make your child as comfortable as possible and spend time with them, as opposed to treating them like garbage?



Prolifers think that late-term abortions involve treating the fetus "like garbage" because prolifers take great care not to read any actual real-life accounts by women who chose late-term abortion to save their own life or to ensure their wanted baby had a swift painless death when still a fetus instead of a horrific slow agonising death. And then I guess prolifers like to think of the women who go through this as garbage, and the doctors who perform these life-saving abortions as cruel heartless monsters, and they don't want to take in any new information to change their minds. Prolifers are bigoted, heartless, abusive ideologues. That's just a fact.

secularprolife.org said...

It's a biological fact that human beings exist AS human beings the moment they are created at fertilization.

No, it's a biological fact that something composed of human DNA is created at fertilization, nothing more, and that something may or may not become a human infant in 9 months.

secularprolife.org said...

**The word "kill" or any variation isn't devoid of meaning.**

When you throw it around, and apply it to anything in order to try to get people to feel sad feelies about that thing, without explaing WHY they should have sad feelies, other than your using the word (gasp) 'kill, it may have a meaning in the strictly technical sense, in that it has a definition in the dictionary, but it no longer has a meaning in a moral or emotional sense.

**So, if being human isn't enough, what would it take for you to be sympathetic toward preborn humans being killed?**



For them to both have brain function, and not be existing inside another person, which no 'human being' has a 'right' to do, regardless of their 'very life'.

secularprolife.org said...

** It just seems like many people either don't understand this or are so taken in awe by the wonders of science and fetal/human development that they shun these humans since they don't look like 'the finished product' so to speak**


Sorry, no, no, no. This particular claim has been made before by myintx, but when I asked her, she refused to show me links to all these pro-choice people who supposedly do not regard the embryo as 'human' because, and ONLY because of the way it 'looks' and for no other reason whatsoever. Unless you can show me links to pro-choicers who actually claim that the ONLY reason they do not regard the embryo and zef as human is it's 'looks', and no other reason, your statement is nonsense.