tag:blogger.com,1999:blog-8222122824332668034.post5422588069921708650..comments2024-03-15T23:48:45.869-04:00Comments on Oh, the humanity of it all!: In two minds... about BioEthicsSUIRAUQAhttp://www.blogger.com/profile/17918432443330964561noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-8222122824332668034.post-58698587266669659332010-12-28T06:07:27.350-05:002010-12-28T06:07:27.350-05:00wow, ethical pickle.
Personally I'm comfortab...wow, ethical pickle.<br /><br />Personally I'm comfortable with the regulatory situation here in the UK, given the requirement that the second child should be 'wanted' aside from its utility as a saviour sibling.<br /><br />I have little problem with a bone marrow harvest being carried out on a one-year-old - and I don't think the comparison with a comatose adult is helpful. A comatose adult would be capable of making a decision for themselves had they not been in a coma - whereas the child couldn't, in any circumstances, make its own mind up. So its nearest kin would in my mind be perfectly entitled to decide on its behalf - some support should be provided in later years to help them explain the situation when the 'saviour' grows up, but aside from that I see no get-out from the fact that the first child would likely die without intervention...teekbloghttps://www.blogger.com/profile/16373974669367838018noreply@blogger.comtag:blogger.com,1999:blog-8222122824332668034.post-34021434886087958542010-12-22T12:11:03.710-05:002010-12-22T12:11:03.710-05:00Austin Elliot has pointed to an important article ...Austin Elliot has pointed to an important article in the Journal of Medical Ethics, by Sheldon and Wilkinson of the Centre for Professional Ethics, Keele University, UK. It's in PubMed Central, so the <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1733988/pdf/v030p00533.pdf" rel="nofollow">PDF</a> is freely accessible. It deals with the exact same question. I am running away to read it.<br /><br />J Med Ethics. 2004 December; 30(6): 533–537.<br />doi: 10.1136/jme.2003.004150. PMCID: PMC1733988SUIRAUQAhttps://www.blogger.com/profile/17918432443330964561noreply@blogger.comtag:blogger.com,1999:blog-8222122824332668034.post-57673318744099734802010-12-22T12:05:00.424-05:002010-12-22T12:05:00.424-05:00Thank you all for commenting. Eva, I agree with yo...Thank you all for commenting. Eva, I agree with you on points 1 & 2, and I think I understand the nuance of your point 3. I have no problem with IVF either, and designed like a scientific experiment, IVF in this case is the most obvious choice for the reasons of parsimony, targeted action, specific results and so forth, as Austin also pointed out. But I questioned not the process, but the ethicality of the motivation behind it.<br /><br />Austin, this <em>was</em> done in the UK, as mentioned in the original article - Bristol Royal Infirmary, and the monitoring at Aberdeen, IIRC. I don't know if it was through NHS, though. The overall cost, 10K pound sterling, seems absurdly low.<br /><br />Therefore, I don't honestly know about the money angle. The news report, of course, didn't mention whether the doctors pushed the savior sib angle as the fringe benefit or the main cause. But had there been an ethical committee discussion, surely they couldn't have missed the convenience of the couple wanting another child right at this juncture?<br /><br />Prof. Curry, same as you, I wouldn't hesitate to be a tissue donor if I were found a match for a loved one under similar circumstances. But I must make an important distinction here (which also answers a similar question of some of my Twitter friends).<br /><br />I, as an adult with full control of my mental faculties, am empowered to offer my tissue/organ to whatever cause I deem important, as are you all. However, an infant of one year is not.<br /><br />The situation, for me, becomes even murkier when I find that the baby was created (no matter by what means) especially to serve as a tissue donor. His birth was not incidental, but rather central to the process of the treatment of the older sib. This (what you eloquently term as 'utlilitarian approach' and provide valid examples for) is what has made me uncomfortable.<br /><br />One of my Twitter friends likened my discomfort to the ignorant (and oddly, fashionable) opposition of the religious right to using human embryonic stem cells. I most emphatically disagree. As I mentioned in my post, the blastocyst is not a living being, and I have no beef with collecting cells from it for the purpose of research and treatment. I am talking about a fully formed, born human being, with certain inalienable rights, especially one who's unable to provide consent.<br /><br />Prof. Curry, about the sense of worth for the child, who'd come to know that he saved another's life... I'd tend to agree BUT - the child didn't know it at that time, and couldn't have consented to be this savior. Doesn't that go against the ethics of informed consent that we duly impose on situations involving adults? Allow me to propose this hypothetical: would it be acceptable to, say, having identified a tissue match in an unconscious or comatose adult, simply use his/her bone marrow to save someone else's life - implicitly assuming that the said adult would later bask in the glory of saving a life?<br /><br />TBH, I don't know.SUIRAUQAhttps://www.blogger.com/profile/17918432443330964561noreply@blogger.comtag:blogger.com,1999:blog-8222122824332668034.post-47424412278337856212010-12-22T10:44:49.846-05:002010-12-22T10:44:49.846-05:00Before I answer, let me copy and paste what Eva an...Before I answer, let me copy and paste what Eva and Austin wrote in my other blog.<br /><br />Eva said:<br />There are several issues, I think:<br /><br />1. The parents knew that it was possible to save their daughter if she had a sibling who was a donor match. If they had decided not to get another baby, would they have consciously obstructed their daughter's treatment?<br /><br />2. The younger sibling will find out later that he was created to save his sister, and that will probably make him uncomfortable. But people concieve/get/keep children for all kinds of reasons: to save a marriage, because they were drunk, religious reasons, etc. Will this boy grow up feeling better or worse than those other kids?<br /><br />3. Would it have been better if he was conceived naturally rather than through IVF? IVF allowed the parents to choose a pre-implantation embryo with the right characteristics ("designer baby") but if they had gone the natural way, they might have had another three or four kids until they got one baby who could be a donor. I would argue that in this sitiuation the "designer baby" was actually more ethical than going about it in a trial-and-error way and ending up with multiple unwanted children until they got "the right one". (But I am already in principle not opposed to IVF, and I realize this argument may not hold for people who are more comfortable with raising unwanted kids than with the generation of excess embryos that is part of IVF.)<br /><br />So it's not just the "saviour sibling" dilemma, but also the ethical aspects of IVF to weigh here.<br /><br />Posted by: Eva Amsen Dec 22, 2010 11:10 AM<br /><br />Austin said:<br />If this was in the UK and done on the NHS there will have been a long assessment process, including the psychiatrists and the ethicists. If there was any question in their minds that the parents ONLY wanted the child as a "saviour sibling" then they would not have got approval. Full stop.<br /><br />The procedure would only go ahead if the combined team (probably up to a full hospital Ethics Board, or even beyond) had concluded that the parents genuinely wanted another child, and that the saviour sib aspect (and hence the IVF) was essentially a "side benefit".<br /><br />As to the bone marrow draw when the child is below the age of consent, I guess they are likely viewing this as a trade against "he will later know that he was part of saving his elder sister's life" <br /><br />The reason for not doing it by natural conception is that then you do not get the ability to pick an embryo (i) with the correct "saviour" gene combo; and (ii) without the disease. If the parents are carriers of a recessive mutation they always have a 1 in 4 chance of a child with the disease. This is avoided with IVF, and would be a reason for such a couple to be offered IVF for pregnancies subsequent to the one that produced the child with the genetic problem.<br /><br />Anyway, the ethical approval process will have been mostly centred around the "Will the new child be wanted and loved for itself" issue. After that is decided, there is no reason NOT to go the IVF / pre-implantation screening route, if you discount the religious objections; the technical process is pretty standard these days.<br /><br />Of course, not all jurisdictions and clinics would apply this kind of ethics process. In some places it may be less about the ethics, and rather more about the money. <br /><br />Posted by: Austin Elliott Dec 22, 2010 3:18 PMSUIRAUQAhttps://www.blogger.com/profile/17918432443330964561noreply@blogger.comtag:blogger.com,1999:blog-8222122824332668034.post-82647356084050099352010-12-22T05:01:30.624-05:002010-12-22T05:01:30.624-05:00If it was my child who was sick, I don't think...If it was my child who was sick, I don't think I would hesitate to follow this route. Just as I wouldn't hesitate to be a tissue donor if I was an acceptable match.<br /><br />My guiding thoughts would be:<br /><br />Parents who loved their ill child enough to put themselves and another child through this would certainly have a great love for the 'rescuer' child born by IVF.<br /><br />Is this utilitarian approach to child-birth so different from what happens in countries where children are sometimes produced to help with family economics (work on the farm, take care of parents in old age)? <br /><br />Would not the IVF child be glad of the chance of life afforded by these unusual circumstances? We are all the result of long series happy accidents, chance encounters etc. This is just a variation on a long-standing theme.<br /><br />Would there not be a great sense of worth for the IVF child, knowing that just by being born they had saved another. That is a value and meaning that no-one else has. <br /><br />For sure there are qualms about the issue of consent, but if the situation is explained carefully when the IVF child is at an age to understand and he or she grows up within a loving family, I don't see that issue as insurmountable.Stephenhttps://www.blogger.com/profile/11344755591184365022noreply@blogger.comtag:blogger.com,1999:blog-8222122824332668034.post-58582120233396324632010-12-21T23:03:53.699-05:002010-12-21T23:03:53.699-05:00ethical dilemma, indeed. good point raised.ethical dilemma, indeed. good point raised.kaustubh.adhikarihttps://www.blogger.com/profile/08882268138270240856noreply@blogger.com