Chris' courageous decision

Group member Chris writes about a recent ethical dilemma she had to tackle (posted up on her behalf by Anneli due to technical issues!).

 I recently went to France for the weekend with my son and we came across a large charity event, where you could pay for a ride in a Ferrari. My son is car mad, so, as an early Christmas present,  I said that he could have a go.

It seemed to be a national event as there was also a telethon taking place. The charity's leaflets showed a photo of a young girl, so I presumed it was a children's charity and didn't think any more about it.

It was only later, when I read the leaflet, that I found out it was a charity dedicated to genetic research. My heart sank, as I could imagine that they used human embryos. Shamefully, I was also a little glad I hadn't known beforehand, as my son would have been so upset if I had promised him a ride and had then said he couldn't have it.

I thought some more about how most pro-lifers would refuse treatment for themselves or for their children if the treatment was a result of genetic research on embryos, and then I realised I'd done something far worse by helping fund it!

I decided in the end to contact the charity and ask them to give my money to another children's charity. I explained in my email the reasons behind my request. I just hope they understand. Some people can't see a problem with using aborted embryos for genetic results, as they see it as something good coming out of something bad. I do understand their point of view but it also feels wrong to benefit from something so tragic and so fundamentally wrong.

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Whilst she's posting Chris' words up, Anneli adds, "Thanks for sharing your experience, Chris, and well done for sticking to your principles.  It can't have been easy to write that email.  I think this is a situation more and more of us will be coming across these days with regards to medical research.  I myself came across something similar with regard to a charity that's been supporting my daughter (see previous blog post - unfortunately we've never received a reply from the charity in question).

"St John's Pro Life Group has been having the very discussion Chris alludes to recently with regard to the morality of using vaccines, like the rubella vaccine, which are developed using a cell line derived from an aborted foetus.  We will post more about this dilemma soon!"

Kind hearts and consciences

A quick snapshot of what Aila and I did this morning... We were actually up at East Surrey hospital so that Aila could have her blood pressure monitored whilst they found out whether she would tolerate a certain heart medication (unfortunately the results weren't hopeful), but we had to pass the time somehow and once Aila had got over a dizzy patch we discovered that you're never too old to enjoy a wall-mounted Duplo board.  What you see here is my portrait, the extra-clever bit being of course that the initials are both that of the subject (me) and the artist (Aila).  I created a superb dog picture myself, but failed to digitally immortalise it!

With all the controversy going on at the moment surrounding the NHS and various reports being circulated about standards of care, I thought I'd just stick my head above the parapet and pay tribute to all the many wonderful medical professionals who have dealt with us since Aila's diagnosis two years ago.  A big huge THANK YOU to you all, for making a difficult situation that bit easier to cope with. We have met with loads of care and kindness and this morning was no exception; the cheery nurse had plenty to do hooking Aila up to an exceedingly beepy monitoring machine at 15 minute intervals but still kept us plied generously with toast, tea and blankets.  (I would like to include Aila's hospital lunch in this tribute but alas that would be pushing things.  It was nice that she was offered one though and I can honestly say I've never tasted custard like that before!)

In the midst of all this generous care, though, I do have a dilemma.  I guess it's just part of living in a world whose heart, though often kind, doesn't always beat to the same rhythm as that of a Christian pro-lifer.  It would be so easy if the world really were divided into clear "pro-life: good" and "anti-life:evil" camps but of course it just ain't like that.  Differing worldviews and ethics can be married to differing motives in a bewildering variety of well- and not-so-well-meaning combinations, until one ends up finding oneself in the position of the Biblical farmer who was in danger of pulling up his wheat whilst trying to weed out the darnel.

My own wheat-and-darnel dilemma concerns a smallish but excellent charity, the only one I know of set up to specifically help patients with Aila's and similar conditions.  We are members of this charity; I have spoken to its representatives on the 'phone, as have others on my behalf, and found them very helpful and friendly; it does a lot of good work both in the practical support of sufferers and in funding medical research into their conditions.  The trouble is, of course, that this charity - like so many other medical charities - belongs to an umbrella organisation, the Association of Medical Research Charities (AMRC), which supports embryonic stem cell research and pre-implantation genetic selection of embryos (in IVF).  I have emailed the charity to ask what their own stance is and whether they in fact support medical research of this type - from following their website and members' newsletters I have not noticed any embryonic stem cell research projects, but that doesn't mean that none are, have been or could be funded by them.  Unfortunately I have not yet had a reply.

I have noticed several excellent projects that they support. In the case of Friedreich's Ataxia in particular, there seems to be a lot of very hopeful research going on and I would like to donate towards it as and when I am able.  I just don't know how to do that without quite possibly inadvertently funding projects that do not accord with my conscience.  And I don't want to not fund the "good" research, because every day I see my daughter struggling with her condition and I would move mountains to help her if I could.

My worst nightmare of course is that a treatment which dramatically alleviates or reverses the damage done by the disease will be developed, but using a technique which I cannot in conscience accept.  I cannot imagine anything more heart-rending and soul-ravaging than watching your child deteriorate with a curable condition.  If the illness were mine, the choice would be easy - I would suffer and if necessary die rather than use the treatment.  But it is not mine; I only wish it were.

By the time anything like a cure might be on the horizon, the choice of whether to take it up will be my daughter's as an adult, not mine, though that is cold comfort.  I can only hope and pray that it will be a choice between equally ethical alternatives.  In the meantime, given that I do not know of any specifically "pro-life" institute devoted to researching into conditions like Aila's, my dilemma continues.  How do I support the wheat of those ethical alternatives whilst making sure I am not also feeding the darnel of embryo research?  In this complicated, topsy-turvy world where the sun shines on the good, bad and well-meaning alike, can I?