another interesting article from qpr fan and science editor of the times mark henderson here
apparently, leading scientists claim that fusing human dna with animal eggs can lead to effective treatments for people with incurable crippling diseases such as motor neurone and alzheimers. they also say that their research falls completely within the regulation of the human fertilisation and embryology act. glad to know that there is one, although i think it dates back to 1990 and is probably in need of review.
next to this story, we have that of ashley x, a young girl whose parents have had her physical development arrested through surgery and hormone treatment so that she will never reach puberty. the parents believe that doing this will improve her quality of life since she is severely disabled. there is an op-ed in the times today by sarah vine supporting the parents here
vine says: "The key ethical question here is not about whether Ashley is being denied her right to reproduce — a right that is academic anyway because of her condition, which is incurable; it is about what keeps this family together. It’s about common sense and human decency. It’s about parents of disabled children — who, after all, have a right to an existence too — and the limits of their mental and physical endurance."
i am knocked sideways by this one. there i was teetering on the brink of thinking that stem-cell research using human dna and bunnies might be justified for medical reasons ... and then i saw the story of ashley and am a bit flummoxed.
maybe it is apples and oranges. not sure. why am i repulsed by the thought of surgical removal of a child's reproductive organs, and not by a frankenbunny? partly, i suppose because i also have a uterus and am responding rather viscerally.
i do find vine's statement incongruous. her use of the term 'ethical' does not make sense in this sentence. here it's definitely apples and oranges, the apple being ashley's basic rights as a human being, and the orange being the issue of what kind of support the family is obligated to provide. i do not believe that making it easier for the family to cope is justification for sterilisation of a child.
a link to the telegraph summary of the case, which includes links to the blog of the parents and some photographs of ashley here.
having read it, and found out more about the situation, i feel less judgmental. ashley has the mental and physical abilities of a 3-month-old baby, and is deemed incurable. nevertheless, it does not feel ethical. here is part of the telegraph report:
"Her parents want to care always for her at home but feared they might not be able to if she was larger.
"As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, back yard, swing, walks, bathtub, etc) instead of lying down in her bed staring at TV (or the ceiling) all day long."
Her smaller, lighter body is better suited to constant lying down and is easier to be moved around, her parents argue.
Rounding on their critics, they wrote: "Some question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal (including the brains he endowed them with) to maximise her quality of life.
"Knowingly allowing avoidable suffering for a helpless and disabled child can't be a good thing in the eyes of God.""