#shanenaz

We're doing it again! This time we are biking from Petra in Jordan up to Nazareth in Israel, to raise money for the Nazareth Hospital CT Scanner appeal. Last year we raised over £50,000 for the Children's Unit! Nazareth is the largest Arab town in Israel; the people are lovely, and the kids are awesome. Nazareth also treats kids in the West Bank of Palestine who have very limited access to healthcare. They need your help! Go to my sponsorship page to find out more and see what you can do! Maybe even join us..?
http://justgiving.com/shanenaz

08 May 2012

Should we be allowed to design our babies?

I say yes - within limits. Check it out: http://www.4thought.tv/themes/should-we-be-allowed-to-design-our-babies/shane-mckee?autoplay=true with a big hat tip to the very nice folks at Waddell Media and 4thought.tv. The other films in this series are definitely worth a watch.

13 comments:

  1. You certainly present well, Shane - I'm not sure about the no tie thing, but ho hum - and there's a certain Christine Keller reference going on with that chair too!

    But, emmm, 'limits', you didn't actually get to that bit, what would you say they are?

    And you said, 'Tremendous blessing." You did say 'tremendous blessing', didn't you? Blast from the past?

    You can take the atheist out of Christianity, but you... :-)

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  2. Hi Peter,
    As you probably can imagine, the "blessing" bit was very deliberate :-) Science provides great blessings for us every day! I did joke with the producer that we should flip the chair round and do the whole Christine Keeler thing, but she felt that might detract from the gravitas of the message. It was highly edited; my view is that this is serious technology, and should only be used for serious ends. "Frivolous" things like sex-selection for the heck of it, hair/eye colour (which are modifiable after birth anyway!), height - these are not appropriate uses of a technology that is not entirely risk-free. I think we need to keep a perspective. Most babies will result from normal conceptions and pregnancies; that will not change.

    So for me the limits are that if we are selecting, it has to be for a clinically significant disorder, where the risk outweighs the risks of the procedure, and where the family are fully aware of what we can and cannot do.

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  3. Shane - in other areas of medicine we have seen increasing pressure to deliver the wishes of patients, whether or not they are deemed clinically appropriate (driven, I think, in part by a tendency for autonomy and utilitarianism to trump all other ethical principles). "Choice" and consumerist attitude is endemic. "Clinically significant" is hard to pin down as both clinicians and patients have varying ideas as to what that actually means. I'm sure you have a brake and an accelerator in your mind, but I'm curious what the brake is and whether or not all clinicians in your field are likely to use the brake at the same time, or whether some will be accelerating whilst others feel it more appropriate to brake.

    Further, would it be accurate to say that you're not a Darwinist "all the way down"? Otherwise why should there be a brake at all? Eugenics could be argued to be not only clinically significant improvement, but evolutionarily significant.

    I encourage you to enlarge on this beyond the TV soundbyte. TV sometimes fails to bring out important nuances.

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  4. Hi Slicer,
    The wishes of the parents for their next child not to have a crippling or fatal genetic disorder certainly sound very clinically appropriate to me, and indeed most doctors, and that is what we are talking about here. To equate this desire with "choice" and "consumerism" is really very unfair, and I am sure you are not trying to suggest this. If you are suggesting that the sort of narrow and extremist philosophy spouted by some religious organisations and their affiliates should carry weight above the considered and often painful decisions of families and the very personal and protracted discussions they have with medical professionals, then I would respectfully tell you where to get off.

    Exactly what ethical principles do you feel are challenged by the use of this sort of technology (i.e. PGD)? As I have argued elsewhere, the reduction of the ethical value of human life to the merely biological functioning of embryonic cells is incredibly demeaning. The ethical use of the term "person" simply does not apply at this stage of development. It is blatantly *un*ethical for patients to be vilified in the way that you have seen happen on Twitter, by being accused of launching "search and destroy" missions on their pregnancies - I'm sure you would agree that such scurrilous language reflects ethical ignorance and lack of caring on the basis of the individual in question.

    For clinicians operating in this area, there is no significant issue here, nor, it has to be said, is there with the patients who come to see us, whether they come from Protestant backgrounds, Catholic, Muslim, Jewish or Humanistic etc. There is no "slippery slope", and we proceed by carefully evaluating each scenario as it comes up. It's not even "utilitarianism" as you rather unfairly characterise it - it is doing *good* for families.

    I'm not sure what you mean with "Darwinist all the way down" - I am not a eugenicist, nor are any of my colleagues. The modern evolutionary synthesis is secure as a scientific explanation for the diversity & characteristics of life on our planet, but has nothing whatsoever to do with ethical decisions relating to patients. Unlike some former doctors, I actually have patients and families who come to me, and I have a duty to help them. Eugenics is not a tractable approach to improving human health, either in the long or short term - ironically, it's *evolution* that shows this to be the case.

    Yes, TV sometimes fails to bring out important nuances, and I only got 1 min 45 seconds - most of my talks are substantially longer than this - but I think you will hardly disagree with any of the specific issues I mentioned. Or do you? It's fine to pay lip service to simplistic principles, but where do you stand when the rubber hits the road?

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  5. I guess I might answer your closing question when you've answered mine :-D.
    I have NOT "equated" the desire for a healthy child with consumerism, as you imply, but the potential for consumerism is self-evident, including in the attention-grabbing title you chose to give to this blog post! You infer incorrectly a judgemental meaning on patients, or parents, or clinicians in my comment, and indeed tip over very quickly into some judgementalism of your own... And it is entirely reasonable also to mention utilitarianism as a risk, as it is in many areas of medicine; whilst it's both unfair & incorrect of you to suggest that I had characterised current practice as utilitarian.

    Ethical principles, and their competition with one another, are common to all medical disciplines so I'm not singling out PGD here - but since that's the subject you've chosen to talk on in the public domain, and that there are areas of controversy it's entirely reasonable to ask the question. After all the HFEA saw a need to restrict gender selection of embryos, and you have implied that you yourself see hair/eye colour and height as clinically insignificant priorities. So... what constitutes clinical significance? "Carefully evaluating each scenario" tells us nothing. Against what standards do you evaluate each? Or do you simply wish to avoid answering the question by suggesting that the question is paying lip service to simplistic principles? My understanding of ethical principles is that they're not particularly simplistic, and I have some experience myself with the challenge of implementing them in clinical practice, rather than merely paying them lip service. So are you interested in demonstrating that you're not just paying lip service to the term "clinically significant"? Come on... your first sentence in this blog post is "I say yes - within limits" - so how about telling us what those limits are, and what they're based on? Don't leave us with the impression that you're hiding a lack of response with the distraction of incorrect inferences from my comment.

    As for you not understanding "Darwinist all the way down," let me give you an example. If there was increased medical opportunity to increase the intelligence of human individuals, and ultimately the gene pool, would it not be a good thing to intervene to do that? If your answer is "it depends," then it would beg the question "on what?"

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  6. John, you seem to have a very weird view of ethics. The purpose of ethical practice is not to build up a judgemental framework of "right" and "wrong" as these are not categories that you can objectively attach to historical events (well, you can, but that doesn't help very much, other than to look back in horror or admiration as you see fit). The real purpose of ethics is to enable us to make decisions that we end up happy with.

    Once you've tumbled that key principle, you'll find things a bit more straightforward, and you will also find that "it depends" is an extremely realistic answer. Because it DOES depend - on many things. You are faced with a fork in the road, and whether you go left or right is not absolutely determined by simplistic and convenient labels, but by you making a *decision* based on weighing several complex variables.

    Ethical reasoning helps you distil basic principles, but you need to realise that doing nothing is still a decision. There is no passive get-out clause here - doing nothing has consequences, and you need to defend inaction as much as action. So those are some thoughts for you to mull over while you try to get your head around these issues.

    I am puzzled as to why you simply ignored my response to your "Darwinist all the way down" mischaracterisation. An understanding of Darwinian evolution, which is responsible for us as we are, does not normatively imply that we must therefore direct its course by artificially selecting for this or that trait. It is a simple non-sequitur, but you excel at those.

    And by the way, *I* did not choose the title - it was chosen by 4oD, and I used it. You did watch the film series, didn't you?

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  7. Your puzzlement first:
    Asking a question is neither a characterisation nor a mis-characterisation. *Of course* an understanding of Darwinian evolution doesn't imply that we must direct it. Still, some might think it's a good idea to give natural processes a hand, where they're not doing a good enough job - to make changes to individuals/the population which improve their chances of survival. I asked what your ethical brake is in improving the genes of individuals and, at least in theory, the gene pool. If you could eliminate cystic fibrosis from the population, would that not be a good a thing, analogous to eliminating smallpox? If you could eliminate inferior intelligence by genetic manipulation, would that not be ethical? If not, why not? I haven't ignored your response - you haven't given one with any substance!

    Thanks for the attempt at an ethics lesson, but I was 'getting my head around' ethics while you were still watching Blue Peter, so don't try patronising me. Looks like you've a bit of catching up to do if you think that ethics is there just to make you (and/or me) feel happy. Societal ethics are the principles and bounds within which society deems practice to be justifiable or not, and include non-maleficence. Ethical regulation is there to keep society happy that Johnnies like you and me aren't just doing what makes us happy.

    Back to your lack of response. Of COURSE "it depends"! - that covers all possible things on which your decision might be made & for that very reason it's a non-answer. (I don't dispute that do nothing is a decision but that's beside the point). Disappointed that, after failing to respond for 2 weeks, you still won't clarify what you mean by "within limits," but instead indulge your usual habit of trying to ridicule questions/questioners you don't like answering. Best of luck with that approach when you apply for research ethics approval to an NHS REC. "It depends" won't cut it. Hopefully you won't ever be referred to the GMC for unethical practice but might I suggest that, if you are, ridicule and avoidance of answering questions wouldn't be a good approach to explain your approach is ethical; nor would resorting to an unstated personal principle that left you happy with your decision.

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    Replies
    1. '"It depends" won't cut it.'
      That is a sweeping and erroneous statement. "It depends" means "on a case by case basis". If you dispute that decisions on important and sensitive (read: emotional) issues should be subject to a crude black-and-white one-size-fits-all reglementation rather than individual decisions based on the specifics of each case, there is something seriously wrong with your understanding of ethics.

      By the way: attempting to patronise someone as obviously intelligent and thoughtful as Shane makes you look a complete dick. Don't do it if you want to be taken seriously as a debater. Of course, also having the slightest idea of what you're talking about would also be of use, but even I can see you're beyond help here: 'but I was 'getting my head around' ethics while you were still watching Blue Peter,', forsooth!

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    2. Oops. For "dispute" read "hold". It should make more sense that way.

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  8. anarchic teapot.
    1. I'm fully capable of understanding sensitive and emotional issues in clinical decision-making. It's kinda necessary in my day job. It's not without its ethical challenges either. I'm not looking for anything that is "one-size-fits-all," and can't see how you could possibly read that into my question.
    2. My Blue Peter comment was in response to Shane's patronising language (heck the 'getting my head around ethics' was a direct quote of his wording to me, suggesting I obviously hadn't - and that I still had to "tumble" a key principle of ethics) so, if you're going to take offence at it, kindly show some equity.
    3. I invite you to support your assertion that deficiencies in my knowledge of ethics are clear by providing a credible source which contradicts my description "ethics are the principles and bounds within which society deems practice to be justifiable or not, and include non-maleficence" and instead favours Shane's "the real purpose of ethics is to enable us to make decisions that we end up happy with."
    4. I'm not trying to have a debate! I simply asked a question. The ensuing discussion is largely around allegations that the question is not valid, or that I know SO much less about ethics than Shane.

    The original question remains: In Shane's view, what are the sorts of things (principles, not individual case issues) that should hold us back from, or should slow us down in, delivering certain kinds of genetic manipulation in the context of the "designer babies" subject he chose to talk and blog on? He said he had limits, I'm merely inviting him to say something about the limits he perceives should pertain.

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  9. Ah, Slicey, you are a funny wee man, there's no doubt about that. After all, did Our Lord not say, "By their membership of committees shall ye know them"?

    So if you're dropping this "Darwinist all the way down" piffle and merely asking the question "What are the ethical limits to 'Designer Babies'", then I think I'll help you by putting up a new post on precisely this topic.

    Incidentally, you come here to debate. You don't simply get to ask questions without running the risk of having a few popped back at you. That's only fair - your worldview and ethical framework (such as they are) do not enjoy a privileged status, and I suggest you have not given them as much consideration as you think you have. If you feel I have misrepresented your questions, you do of course have the right to challenge my characterisation.

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  10. Happy to debate too - but you can only challenge and patronise the questioner and his credibility for so long before you have to get around to answering the question. Otherwise your own credibility suffers. Looking forward to you answering the question.

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  11. However, when the questioner tries to front-load their question with a load of pants, it is important to unpack the question and extraneous baggage before proceeding to an answer. Back in your box, Grasshopper. You are not a barrister; this is not a cross-examination. With patience you will find the answer you seek, and with that answer comes a challenge to address your own preconceptions about ethics. These may be adequate for the purposes you have applied them to so far, but this is different territory.

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