Tuesday, August 19, 2014

Why I Cannot Accept the Ice-Bucket Challenge

Recently, I've received a few "ALS ice-bucket challenges" which I cannot accept.  I don't fault any of my friends for giving me this challenge.  Thanks for thinking of me and trying to include me!  Really.  You guys are awesome, and it was really fun watching you shiver!

Amytrophic lateral sclerosis (ALS), more popularly known as Lou Gehrig's disease, is a horrible neurodegenerative disease affecting everything from speech and swallowing to basic mobility.  I personally have friends whose parents have languished and died from this disease, and experts estimate that 30,000 Americans suffer from this disease.  It's as good a place as any to focus medical research efforts.

But I cannot accept the challenge, and I hope you'll understand why.  It's not because I'm afraid of cold water.  (Although that's true).  My concern is where the publicity and money might go.  Specifically, I'm concerned with the KIND of research that might be financed by my hypothetical promotional activity.  (For those who don't know what this is, you're supposed to dump a bucket of ice-water on your head, and video it, and then challenge others to do it.  If you don't do it, you're supposed to give $100 to the ALS Assocation, and if you do do it, you either don't have to give any money to the ALSA or you're supposed to give $10 to the ALSA, depending on the version).

The ALS Association funds a number of different types of research, and among these different types of research is embryonic stem cell research.  For those who don't know what this is, this is when scientists take a female egg and a male sperm and fertilize the egg in a lab, and then after the new life begins to form, they remove the building blocks of life--embryonic stem cells.  This is the same process that occurs when people struggle with infertility and then get in-vitro fertilization--the important difference is that instead of implanting the fertilized embryo into a mother so that it can grow into a baby, these embryos are experimented on, and then discarded.  They are created for the express purpose of destroying them for medical research.  The ALS Association website says this:
Adult stem cell research is important and should be done alongside embryonic stem cell research as both will provide valuable insights. Only through exploration of all types of stem cell research will scientists find the most efficient and effective ways to treat diseases.
UPDATE:  Since I originally posted this, the ALS Association has changed their website. Screenshots of the original, which I cited, can be found here.

Sometimes, stem cells are harvested as part of in-vitro fertilization as described above, and other times they are harvested as part of an abortion procedure.  For example, one clinical trial, which was supported by the ALS Association with a $500,000 grant involved "stem cells ... from the spinal cord of a single fetus electively aborted after eight weeks of gestation."  At 8 weeks, a baby has it's own unique DNA, is 2 centimeters long, has tiny fingers and toes, and a heart beat of about 160 beats per minute.

Some might argue that life does not begin at conception.  But the other options seem entirely subjective scientifically and unsupported biblically.  Some say life begins not at conception, but implantation or even birth--as if the location of the embryo should determine when it is alive.  Some say that it's when the embryo is viable, but this point is completely subjective and would mean that now life begins far sooner than it did a few years ago when we didn't have the technology to save early preterm infants.  At conception, a baby has a unique genetic code, and all of the necessary building blocks for life, and the Bible attributes the properties of personhood to us from conception (Psa 139:13-16, Job 10:8-12, Jer 1:5, Psa 51:5, Luk 1:39-44, Ex 21:22-24).

The reason this is important is because as a Christian, I believe that no human life is intrinsically worth more than another human life.  All humans are created in the image of God (Gen. 1:27, 9:6), and therefore are uniquely valuable and have distinctive worth.  We're not all born "equal" in the sense that we're all able to run equally fast or complete math problems equally well, but we are all equally created in the image of God, and this is where we derive our worth and value.

The problem with embryonic stem cell research is two-fold:  first, it is morally reprehensible to anyone who believes that life begins at conception.  Imagine the outrage that would happen if scientists proposed we grew infants and children for the express purpose of performing lethal experiments on them, no matter how scientifically helpful the results would be.  Secondly, if there is a breakthrough involving embryonic stem cell research, then the resulting treatment would involve mass harvesting of embryonic stem cells, and therefore mass abortions.  In short, embryonic stem cell research involves the destruction of innocent human life.  And therefore, I cannot promote donations to this particular organization when it thinks that infanticide is a legitimate way to save other human beings.

Now, I don't think our response as Christians should be to just throw up our hands, check out, and not do anything.  Instead, we should lead the way in helping those who are suffering with ALS, and work towards finding medical treatments that are ethically researched.  So, I would ask anyone who is making a donation to consider donating to an ethically focused organization, like this one:  http://www.jp2mri.org/capital-campaign.htm.  Checks can be made payable to:
John Paul II Medical Research Institute
540 E. Jefferson St.
Suite 305
Iowa City, IA 52245

Finally, as one blogger on this issue said,
This is a good time to consider the effect that social media activism is having on our culture--and ourselves as actors in it. ...I very much believe in this medium’s capacity for acting as a vehicle for good, yet I also recognize how instant-connectivity is a double-edged sword, making it much easier for a "herd mentality" to develop. Which is all fine and good when the herd is headed in the correct direction, right?  
But peer pressure blows perspective out of the water as we race to belong without first stepping back and considering each and every dimension before clicking “like” or share. How many of you stopped and investigated HOW your money would be spent before emptying the ice cube trays? Exactly. You shouldn’t feel bad about it! That’s not my point. You should feel a little weird and more than a little prone towards caution in the future. 
So don’t look at this as a call for inaction.  I’m asking you to be as active as ever and creative, too; what we’re looking for is a higher level of self-awareness the next time a Facebook buddy tags you with the best of intentions.
HT:  Matt Rooney

33 comments:

Kathie Boyd said...

Well said Nathanael! Wild "coincidence", the "prove you're not robot" text below is ....
"rather dnalyk"

J said...

Interesting take on things. I believe in preservation of life as well. Will have to think on this.

FYI, with invitro fertilization, there are almost always many embryos emplanted, with the stronger/most health one being kept and the rest being aborted. This increases the odds of the healthy baby making it to term and increases likelihood of a successful pregnancy.

So technically, as commonly practiced, this would be similarly abortive.

Nathanael King said...

Right, good point. I didn't mean to imply that IVF is always done in ethically appropriate ways. In my opinion, IVF is only morally permissible when either all of the embryos are implanted, or alternatively, when embryos that are not implanted are donated to an embryo adoption agency. Every embryo should be given a chance at life, and that is the controlling moral principle that I think is important to follow in these cases. Thanks for the comment!

Gabi said...

Everything that I have ever read on embryonic stem cell research says it comes from 5 day old gestation done in a pteri dish. Not from aborted fetuses. In fact 8 weeks old would be way too far along. Where is this information from? Id like to be properly informed.

Nathanael King said...

Hi Gabi, I have a couple of thoughts. First, I don't see what the significant difference would be between 5 days of gestation and 8 weeks. Why would one be okay to experiment on and discard and not the other? Second, the clinical trial I cited can be found here:
http://www.alsconsortium.org/trial.php?id=12

Hope that helps! :)

Faith said...

Thank you for writing this, and laying out your reasons and beliefs so clearly. I too believe in the importance of being informed, and not simply caught up in hype (though I'm glad for the awareness raised).

Julie Kieras said...

That's a good point about the monies potentially going to ESCAPE research. But do you know of any alternatives to financially support ALS research? Can't each donor specify NOT to have their monies used for that kind of research?

Also, regarding IVF, I am currently going through an IVF cycle and can definitively tell you that while they do suggest to fertilize as many eggs as possible there's so much more to it:
Most women going through IVF ate dealing with infertility, so even with the stimulating meds, we aren't producing more than 8-10 eggs in the first place. Second, most Dr's will only implant 2-3 embryos bc they'd rather NOT have to go in and reduce after the fact. Remaining embryos are usually frozen for future use if the first attempt doesn't succeed. In my case, we could not afford to freeze embryos, so we asked to only have 2 eggs fertilized and implanted, meaning there will be no embryos un-used or destroyed. Our dr was very understanding and agreeable to our prolife pov. I think the methods of IVF are much more respectful of life creation than they perhaps used to be. Just wanted to say that bc there's a lot of misconceptions about it if you're not going through it. Thank you.

Julie Kieras said...

Sorry. Auto correct. I meant ESC not ESCAPE! :)

Nathanael King said...

Hi Julie,

The only prolife alternative that I know of that specifically supports medical research is the one I listed above. It is John Paul II Medical Research Institute. You can check it out here: http://www.jp2mri.org/ They do not deal exclusively with ALS, but are targeting medical research on a variety of neurological diseases, including ALS. If anyone else knows of another, I'd love to update my post with it. The other ALS foundations I found that were potentially pro-life friendly seemed to deal with the quality of life for people diagnosed with ALS rather than medical research.

Glad to hear you're making informed choices about IVF! I know that's not always easy or cost-efficient. I sincerely hope your IVF is successful! Blessings,

Nathanael

Krissy Perrine said...

Like this article, like the way it made me think, and like that an alternate organization was suggested so that those opposed to stem cell research can continue taking the challenge and promoting a cure for this horrible disease. But, I don't like the title "Why I Cannot Accept the Ice-Bucket Challenge!" If, as he stated, there is an alternate acceptable (according to the individuals beliefs) organization that does ethically based research, then he should be getting cold and wet AND sending in his $10 or $100, and titling this post to reflect that. Just think it would have gone over better with me. :-)

Jane Ust said...

If you would like to help someone living with ALS in a way that your donation will not jeopardize embryos, please consider giving to the Kreuger family... http://www.gofundme.com/als-is-expensive

Greg has been living with ALS for a decade. The family would like to buy a ventilator for him.

Daniel Van Court said...

You may want to consider ALS.NET instead. Their stem cell research is do exclusively using adult stem cells.

Jane Flowers said...

Nathanael,

The link http://www.jp2mri.org/ you keep sharing doesn't work. A little strange...

Kennedy Patton said...

If you would rather full grown, sentient adults to suffer inside of their own bodies than fetuses which cannot feel anything and do not have sentience to be used for research, you should probably sort out your priorities.

Nathanael King said...

Jane,

It looks like so many people are donating that the site is overloaded. Pretty sweet stuff. My blog has had over 60k visitors today, so it's pretty cool to see people are donating too! Hopefully it comes up soon.

Nathanael

Nathanael King said...

Daniel Van Court,

Can you please show me where it says this on their site. I'd love to have another place to direct people to. Thanks,

Nathanael

Nathanael King said...

Kennedy Patton,

Why do you assume that sentience and the ability to feel pain are what makes a person's life valuable? If someone did not have the ability to feel pain (perhaps due to paralysis) or sentience (perhaps temporarily in a coma), would it be okay to perform lethal experiments on them? What is the significant difference?

Nathanael

Havehope7 said...

actually i also agree that stem cell research is wrong. but i have to say there are a few organizations that you can donate to that do research for als without using stem cells from embryos team gleason is one of them so instead of saying im doing the challenge and not donating why not research and find one tht is okay to donate to again team gleason. i promise yoiu an ice challenge and donaton headed their way will eb something that as a christian you can trust your money will not go to embryonic stem cell research but instead other okay alternatives .

Nathanael King said...

Havehope7,

I've heard that Team Gleason may be prolife. Do you have any support for this? Thanks,

Nathanael

Edward Wright said...

knowledge is power... I really appreciate you man.

Stephanie Gulya said...

What about donating to research foundations which are trying to find a cure/ help people with the disease AND do not do embryonic stem cell research? (If someone already posted this, I apologize.)

Alison Rauschenberger said...

People should be aware that there are a lot of ways to do stem cell research that do not include embryonic stem cells. And when investigating they should pay attention to the type of research being done. While some parents are now harvesting their childs very beneficial stem cells after birth from the cord and placenta, the majority of these stem cells are thrown away. Thousands of pounds of beneficial stem cells are thrown away everyday that could be used for research instead of embryonic stem cells.
And alot of health care progress was made by the Nazis from "research" done on Jews in concentration camps. Does that make it okay because they learned things that now save people's lives?

Walt Walkowski said...

Daniel Edson,

After reading your post, I went to ALSA.org to actually confirm that a person could "designate" his or her donation so that it did not fund embryo stem cell research. I found no such place on the form. You could "designate" the donation to be in memory of someone, but not that it go to a particular type of research, either through the online form or through the printable one.

So how does this "designation" happen? Do you have to write a personal letter asking that it not be used for a particular type of research? Or would it be better to simply direct funds to a different group, still in support of ALS research and care?

The Domestic Queen said...

Well then, you can donate your $100 to the ALS Guardian Angels, who provide services and equipment to families of people suffering with ALS.

Walt Walkowski said...

Great idea The Domestic Queen! I don't know why no has mentioned this group to this point. This group is doing some great work caring for people suffering with ALS and their families.

Go to http://www.alsguardianangels.com/ to find out more.

Molly Griffith said...

Wow. Thank you so much for this information. I've looked into adult stem cell research for Parkinson's Disease; and adult stem cells (no one is murdered) are far more successful than any embryonic stem cells. God cannot work through evil means. Great point about jumping on the social media bandwagon, too! Live and learn.

rlwolfe said...

Thanks for posting your views. I, too, am against using human embryos and fetuses. Not only do I feel it is immoral, but it is unnecessary. Stem cells from rodent embryos and fetuses work just as well. Plus, even though adult people stem cells are restricted to where they came from in the donor's body, human placenta stem cells are just as versatile as human fetus and embryo stem cells. We need to be supporting the search for a cure for these horrible diseases, but we also need to be vocal that there are completely ethical alternatives.

Tania Burinskas said...

there are other ALS charities that you can donate to if you don't support the current research. I am opposed to the ALS research conducted on primates, but I still wanted to support the cause. After some digging I found an org that helps patients suffering from ALS pay their medical bills if they are unable to. no research. and the CEO takes $0 salary, so even more of a win. I'm sure if you do some digging you can find similar organizations so that you can still make a monetary contribution that you feel ethically comfortable with. (we chose trishsangels.org but I'm sure there are more patient assistance programs out there)

Nathanael King said...

Wow! I've received a flood of comments overnight! I just wanted to say that I appreciate the time each of you took to read and interact with my thoughts. For those of you who feel offended by my post, I'm truly sorry. I know that for many people ALS is a subject that brings up painful and raw emotions. I'm truly sorry if my post communicated a lack of empathy to you. I know that ALS is a heartbreaking disease. However, that doesn't change that I feel I cannot in good conscience support an organization that contributes towards the destruction of innocent life.

For those looking for an alternate organization to contribute towards, may I humbly suggest you check out this website: http://judsonslegacy.org/.

While this is not specifically an ALS focused organization, they do deal with a neurodegenerative disorder known as Krabbe disease. These are personal friends of mine, and I've watched them walk through some of the most painful and difficult days I could imagine. Just an option for any of you interested in donating to a good cause. :)

Joel Penhallegon said...

Saving a human life is a good thing, but not at the expense of another human being.
Take one life to save another, that doesnt make very much sense at all.

Mara Martinez said...

I agree with you. How can a organization who wants to help save lives destroy life for research purposes. 269

Mumbah said...

"There's more than one way to skin a catfish." Embryonic stem cell research isn't the only method available. Isn't it true that cord blood at birth contains these same stem cells? Why aren't those kept for research when parents decide not to bank the blood for themselves?

Dragon Of Time said...

Im not religious in any way now. i was brought up Mormon until i was 12 and left on my own. I see What Nathanel is saying. I do not believe in any type of abortion. No matter the scientific outcome. I love science its one of the reasons i am not religious. Saying that it is ok to create a life just to go around and kill it after it has done its purpose, it just out right wrong.