Background: Craig and Charlotte Benson have daughter, Christiane, with Batten disease. Craig is the CEO of Rules-Based Medicine Inc., he founded a charity (www.beyondbatten.org) to fund research to develop a test that could detect diseases like Batten disease prior to conception. As stated on the website, the foundation's goal is: "to make the test a standard of care for all young men and women as part of their routine health screening, and to ensure that it is available to anyone who wants it without the barrier of cost."
Issue: The idea is, "If both parents turn out to be carriers, they can use lab techniques to conceive and test embryos, choose adoption or other methods to avoid having an affected child." Their vision is to eliminate "dangerous" childhood diseases--a worthy ideal. But, in doing so, are we "playing God?"
(Picture) John (11) and Bridie (9) Philpott are diagnosed with Batten disease.
What I think: I think attempting to eliminate childhood diseases and disabilities will be as effective as we have been at eradicating poverty. However, some say that educating children with these diseases is just as ineffective and since I emphatically disagree, it would be hypocritical to use that argument. It is more their tone that I take issue with. My impressions after reading that article are that children with severe disabilities are undesirable (i.e. "prevent conception;" "affected child") . The front page of Benson's charity website explains that Batten disease "takes away the childhood, and then takes away the child." I concede that these children will never be "normal" children, and that no one would wish a disease or disability upon their own children, but that does not mean that we should regret that they were born. Granted, I do not have any children so I can't entirely empathize.
Personally, I love working with children with disabilities. They have their own personalities and they have a perpetual innocent view of life. Of course, like any child, they can be difficult, but overcoming that is particularly rewarding. I also think it is much easier to remember the eternal potential that these children have because their limitations on this earth are so obvious. I recognize that this can be an extremely sensitive issue and that each couple's decision is between them and the Lord. I am grateful that Heavenly Father is in control. I also am grateful for this technology that opens up options for people making this decision. I hope this technology brings us closer to God, who gives life.
Watch Christiane's story:
5 comments:
ohhh interesting. thanks for sharing! i need to read that article/watch the video when i am not in class haha
I think that if people only want "perfect" children then maybe they shouldn't be parents. Every child comes with their owns issues and challenges, but we as parents are here for help them and help them deal with those issues. Make them good people and such. I think it's a cop out not to want a child just because they have challenges. I don't want any child to suffer, but I don't think that's something we can help. We can only make the time they have here better. I don't believe in "eliminating these diseases anymore than I agree with a parent choosing to abort because they know their child will be born with downs or something else (which sadly happens more often than not now.)
Wow, tough issue. But I don't believe in selective conception either (is that an appropriate term?). I do have a potentially life-threatening health condition that can be passed on genetically (my parents didn't know about it till after having 7 kids; 2 of us got it, not bad considering the estimated 50% transmission rate), and I have siblings with other conditions that have genetic ties (for example, 3 of my 6 brothers have Aspergers), so Ryan and I have thought about risk and risk factors with having children. It would be irresponsible, toward our future children and ourselves, to not learn the relative risk and make prayerful, educated decisions about when to have kids and how many to have (Emphasis on the PRAYERFUL). But, I also feel strongly that the challenges that some individuals have are allowed by God for many reasons, one of which is for the rest of us without such difficult challenges to learn from. Particularly for us to learn how to be more loving and better family members, community members, and teachers. Obviously we should take as many measures as we can to "solve" or prevent these problems, but I don't believe we will ever solve or be able to prevent every problem, and on some level, we need to be ok with that. And some "solutions" such as selective conception or birthing, just are not worth the price. I guess I'm preaching to the choir, so hopefully it helps to know you're not the only one who feels this way!
I think this is a tough issue, and I think that it all depends on individual people. However, in my personal opinion (no one get all upset here) that if there are tests out there that can help prevent having a child with those kinds of disorders then I would definitely have those tests done. But thats just me. I'm not sure that it's exactly "playing God", more like taking advantage of modern science. I do agree however that when children with disabilities are conceived, it IS playing God to have them aborted. I don't agree with that. In a some-what response to Vickie, I disagree that selective contraception, or in-vitro are not worth th price, especially if you are unable to conceive children on your own.. which is sometimes that case.
All in all I think its up to the individual couples and God. Pray bout it and find out what is best for you!
While knowing ahead of time through the various tests which are available is not playing God, but as the note above, deciding if that child lives or dies certainly is. However, just some food for thought, is it morally reprehensible to do/not do things which will increase physiological challenges for a child still in the womb? for example, smoking? drinking alcohol? dieting such that diabetes is certain? not taking prenatals? not playing mozart to the womb for 10 hours/day? not reading to your baby in the womb?
Though several of those were suggested with a wink, what if it were true that invetro allowed parents to choose of 6 or 7 potential genotypes the one which their child whose spirit was predetermined would inhabit?
Anyhow, it is interesting to play with the hypotheticals. I will say however, that regardless the phenotype and genotype we or our kids exhibit, life will certainly deal a hand of experiences and challenges which will give us the potential to humble ourselves before God, learn from Him, and partake of the atonement through repentance (whether in this life or the next).
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