Five years later, our knowledge of medicine has made this dilemma a reality. This October will see the first child "conceived specifically with the aim of helping an ill sibling." Essentially, the first Kate of our time. Doctors at Skejby Hospital in Denmark exploited the biotechnology of in vitro fertilization to scrutinize 200 of the mother's eggs for a match with the older sibling suffering from a bone marrow illness.
The case is controversial to say the least, but the vertigo we experience from this story has little to do with breaking rules: this will be the first child born under Patrick's Act in 2004, which legalized the conception of genetic matches to save children in need of bone marrow donors. What then should bother us about creating "keepers" of sick children? We have been taught that medicine aims at every possible attempt to save a life, yet the Hippocratic oath is based on doing no harm. When employing a utilitarian perspective, we reasonably conclude that the pain and discomfort endured by the sibling's keeper does not outweigh the benefit of saving the life of a sick child. This view however puts us in ideologically dangerous territory: are we valuing present life over future life? In Picoult's 2004 version, the parents who had persistently pursued the birth of Anna end up less than sure of their original decision upon growing to love Anna as a child of her own. It would seem that informed consent plays a large role in such cases. Can we be made to believe that parents of severely sick children would consider anything besides doing everything possible to save their child? The choice to save a sick child they have already grown to love at the expense of a child they have yet to know appears fully rational yet unethical at the same time.
By allowing such exploitative conception, we are condoning the desperate decisions of parents who have yet to consider the value of the child they are about to conceive. We are removing the force of law that commits parents to such necessary consideration. Of course, informed consent does not explain the whole of the issue, but merely presents one layer worth considering.
Thoughts?
3 comments:
I don’t believe that humans have the right to create a human for the sole purpose of curing or “keeping” another sick human being. The logic of this procedure is extremely flawed, and clashes heavily with ethical principles. I do see that the purpose of creating this new person is to provide therapy and a cure for the existing sick human, but I don’t believe that human life should be created for the sole purpose of curing an existing life. This takes away from the quality of life of the person being created, because they are born with a previously determined purpose in life, and have given no consent to undergo potentially painful and time-consuming procedures.
However, there are similarities between a living person donating blood or undergoing an organ transplant to save the life of another person and creating a sister with matching blood type who can potentially undergo these same sorts of procedures to help save the life of her sibling. Both these procedures involve sacrificing a part of one’s body for the improvement or cure of the condition of another human. But, the vast differences between volunteering to save a life and being born with the purpose of saving a life lead to issues involving morality. A very important and crucial element of the informed consent aspect of blood and organ donation is that the subject has agreed to undergo this potentially invasive procedure. But, if we begin creating babies for the sole purpose of being donors to already living people, these subjects will have never given their consent to participate in these painful and potentially dangerous procedures. There is something deeply disturbing about creating babies who are destined to be raised as the “cures” for sick humans.
In my opinion, the analysis of the ethics of predetermined donor babies comes down to the fact that informed consent is a vital part of organ and blood donation that maintains the fairness of these types of procedures. If we force babies to be born who have not had the chance to agree to take part in these procedures, we will inevitably tamper with the fairness of organ and blood donation and may potentially compromise the use of these procedures. We must maintain the aspects of these procedures that protect research subjects from being taken advantage of, in order to ensure that the fields of medical testing and donation remains true the principles of human morality.
In this particular case, it does not seem that desperation would significantly affect parents' informed consent. If umbilical cord blood is taken immediately after the birth of the new child, the procedure will hold no risk for the infant. Thus, so far as the child is being exploited to help its sick sibling, it is being exploited in a way that will not harm it. If rationally thinking, non-desperate parents are faced with the choice to help one child by using the blood of another child in a way that will not harm the healthy child, presumably this choice will be easy: they will help their sick child. Unless bringing a child into the world is in itself a cruel action, a conclusion that can be made but is generally not practically used, no harm is being done to the child and this choice is one unaffected by informed consent issues.
The issue becomes more problematic in the case of a child created in order to donate a kidney, or for some other procedure that is medically dangerous for the child. Even here, however, I do not think that desperation would significantly impact the parents' decision or take away from their full informed consent. Kidney transplants are not uncommon; even if there is some risk to the donor, it is generally accepted that this risk is worth taking in order to save the recipient's life. It is true that there is something disturbing about bringing a child into the world merely in order to serve as a donor, but the life of the future child will have value for both the child and the parents regardless of the motivation for its conception.
The issue might be somewhat different if the birth of a second child will create financial or emotional strain on the family, and the quality of life for both children will be lowered as a result. The decision to have a second child, which would not have been made if not for the need for a donor, could potentially have harmful effects in this way. Even so, these calculations do not seem to be ones that would stop rationally thinking parents from making the decision to have this child. Thus, informed consent seems to remain intact in this case.
http://www.cphpost.dk/news/scitech/92-technology/45075-nations-first-donor-baby-conceived.html
http://www.aabb.org/Content/Accreditation/Cord_Blood/Cord_Blood_FAQs/
I think the biggest problem that this situation, of having a child with the sole purpose of being a donor match for the sick first child, presents is the issue of consent. What happens if the “donor child,” in this case, no longer wants to undergo the spinal tap procedure, which is necessary to extract the bone marrow for transplantation to the older sibling? This would cause unimaginable tensions within the household, and the parents might end up forcing the child to undergo the spinal tap procedure against their will. This procedure is very painful for the donor, and would be terrifying to a young child. But as a minor the act of consent falls on the parents. Parents are entrusted with the legal care of their children, under the assumption that they will always act in the best interest of their child. But in this case, in who’s interest should the parents be acting? Should they act to protect their first child, who is sick and will die if he/she does not receive a bone marrow transplant, or should they act to protect the child, which they bore with the intent of using him/her to provide a suitable match for their first child? Are parents in this situation even capable of giving “true informed consent”? According to Arthur Caplan, desperate parents are incapable of doing so, as they have clouded judgment due to the situation. Therefore they would not be able to give consent to the second child undergoing the spinal tap to remove the donor bone marrow. If this is the case then it logically follows that parents should not be allowed to have children with this sole purpose of being a donor match for another child as they will not be able to consent to any of the necessary procedures.
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