Creating Humans: Ethical Questions, part 10 -- Spare-Part Children

~Today's topic is spare-part children (also known as "savior siblings"), in which an embryo is created in order to benefit someone else.  Now obviously, that first sentence carries strong negative connotations, but the practice is not as obviously bad as you might initially think. Specifically, it refers to the result of of a couple using reproductive screening to select for genetic match for an existing, sick child, in order to use the new child's umbilical stem cells.  These stem cells have the potential to grow into any part of the body, and therefore, implanting matching stem cells into a the afflicted area of a sick person can often result in a cure.

A good example of this, and the first family to make use of this procedure, was the Nash family of Colorado.  Their six-year old daughter, Molly, was dying of a rare and fatal genetic disease called Fanconi anaemia.  In the fall of 2000, they used in-vitro fertilization to fertilize twelve embryos, and chose the one that most closely matched Molly.  The resulting son, Adam, not only did not inherit the disease, but stem cells from his umbilical cord saved Molly's life.  Initial reaction was strongly negative from both fertility experts, clergy, and others who considered it a slippery slope towards designer babies.  But this doesn't change the fact that the Nash family now has two happy, healthy children.

Most Americans who have heard of spare-part children know of the practice through Jodi Picoult's novel (and related film) My Sister's Keeper.  In the novel, a couple uses screening as described above to harvest stem cells from their new daughter’s umbilical cord, in order to treat an existing daughter who has leukemia.  Although initially this procedure is successful, years later the older daughter relapses, and the now-teenage "spare-part" sister is pressured to donate a kidney to her sister, causing all sorts of drama! and tension!.

I have not read the book or seen the film, but before I move further into this discussion, it's important to note that that organ donation is not the usual arrangement for a spare-part child.  Ethically speaking, there are three different and increasingly problematic levels:

1. First, there is umbilical cord harvesting.  Since the umbilical cord is usually discarded anyway, there is no direct harm to the newborn "spare-part" child (aside from emotional & philosophical issues that I will delve into below). 
2. Second, there is the more extreme form that occurs in My Sister's Keeper, in which a spare-part child donates material beyond their stem cells.  This is fraught with ethical problems, especially when considering organ donations or painful bone-marrow extraction.
3. Finally, the most extreme and ethically problematic area is for a spare-part baby's material (especially organs, etc.) to be used not for a sibling, but for an adult with health problems.  This is a disturbing and nightmarish scenario which I will also discuss.

The arguments against people having spare-part children are fraught with emotion.  Is such a child simply a commodity?  Will they be psychologically damaged when they learn they were created "merely" to help a brother or sister to live?  Is this an example of having “designer babies”?  Is it the same as “playing God"?  If so, what if anything makes having spare-part children somehow different from the other reproductive technologies that I have examined?

In a bioethical sense, having a spare part child is considered ethically acceptable if two criteria are met.  First, the child's tissues can only benefit a sibling, not anyone else.  Second, the couple must actually want another child, to love and care for the same as an existing child or children.  In other words, a couple should not have another child only for its tissues; they have to actually want another child even without said tissues.  Although this second criterion is in some ways impossible to adjudicate, it at least makes sense.  The goal is to avoid a couple having a spare-part child and treating it like…spare parts.

If this still worries you, consider that evidence from existing cases of families having spare-part children seem to show no negative emotional effects.  Such spare-part children seem loved, normal, and as well-adjusted as non-spare-part children, even if they know they were conceived as tissue donors (such as Adam Nash from the above example).  Also, as with so many of the other reproductive technologies from the course, it's very easy for us to slip into the trap of judging those who make use of them, without considering the needs of others and picturing ourselves in their place.

Also (although it may not be cheering to consider), humans have been having children for specific purposes for all of recorded history.  Consider kings and aristocrats who demand a male heir, or parents who want offspring to carry on the family name (or because their own parents demand grandchildren).  Having children was something simply expected of many ancient cultures, and royal families especially needed to have "backup" children to assume the throne in case of the death of the primary heir.  Nowadays, some women have  children to avoid (or delay) execution or prison time, while other families and individuals may want children simply for tax breaks, welfare payments, or citizenship. The only real difference between this sort of reproduction and families having spare-part children is that in the latter case, parents are forced to be honest about their reasons.  Considering that the child may very well save their sibling’s life, if anything they are likely to be quite loved.

However, there is another, darker dimension to a discussion about spare-part children.  It revolves around the third and most danger-fraught ethical level that I discussed earlier, where a spare-part child is born not to benefit a sibling, but someone else.  Perhaps a parent who needs a tissue match, or perhaps a wealthy individual who pays the parents a great deal of money in order to secure a match for him or herself.  Or perhaps something even stranger.

A (fictitious) example of this is the science-fiction film The Island, which involves an illegal underground center run by a corporation and filled with clones.  The clones, it turns out, have been "ordered" by wealthy individuals who have cloned themselves in order to harvest organs and tissues when needed; the clones, of course, are perfect tissue matches for their "parents".  While such a large-scale operation (and also cloning) is presently the stuff of fiction, I wouldn't put it past an unscrupulous dictator or other wealthy individual to cook up a close tissue match of themselves using their own genetic material, simply to harvest the organs and tissues of their "child".

The idea is frightening: such children are literally no more than spare parts.  They are likely to live their lives locked away, pampered and kept healthy, but isolated without social contact, education, or freedom.  I think the existence of such spare-part people may already be happening, which is one reason why this practice must be internationally regulated.  [On a side note, now that medical science has recognized the usefulness of umbilical stem cells, more and more parents are choosing to have the umbilical cords of their children frozen for the child's future use.]

So to recap, when considering the ethics of spare-part babies, ask this key question: is the child being born solely to serve as a donor?  If so, then it's probably unethical to have the child.  If not, and if it just involves umbilical cells, it’s probably alright.  But consider:

• If a set of embryos are fertilized with the intention of having a spare-part child, and none of the embryos proves to be a good match, are the parents somehow ethically obligated to undergo embryonic implantation anyway, and thus have a non-matching child?  Obviously, we can't force someone to impregnate themself, but if the parents don't want to do it, should we (as a society) take that reluctance to mean the parent's don't really want a child for its own sake?
  
• What happens if the ill child (the intended tissue recipient) dies or severely deteriorates during the pregnancy for the donor child?  Does this place increased pressure on the parents to abort the pregnancy?  If they do so, should they be legally accountable, even if abortion is legal where they are?  Does the fact that it's a spare-part child make any sort of legal difference?
  
• Since the child has no choice about whether or not to be born and donate its tissues, is having the child in the first place somehow unethical?  I think this is only the case if the child must donate additional organs or tissues beyond their umbilical stem cells.  On the other hand, none of us had a choice about being born.  In a sense, we're all here without our consent, so asking "what does the child want?" or "what would the child choose to do in this situation?" is absurd.
  

What do you think?  If you had a young child dying of a disease and matching stem cells were the only cure, would you consider screening for another child who was a tissue match?  Why or why not?

Creating Humans: Ethical Questions, Part 4

~The next lecture in the course is about cloning.  The public perception of cloning has been irrevocably shaped by (bad) science-fiction films such as The 6th Day and Attack of the Clones.  As a result, many people (and lawmakers) have distorted views on what cloning is and isn't.  As an added complication, cloning technology is still in its infancy, and the ability to create human clones is not yet available (despite over-hyped "breakthroughs" every few years that turn out to be hoaxes or fakes).

So what exactly is meant by "cloning"?  The science of cloning can be said to have begun with the successful cloning of Dolly, a sheep, who was created by taking a cell from an adult sheep and fusing it with an unfertilized egg of an ewe in 1996.  Her creation was hailed as both a major scientific breakthrough and a serious ethical concern, because it was assumed by many that it wouldn't be too long until humans were being cloned.  As I mentioned above, the distorted public view of cloning led many to fear that we'd be copying ourselves and having our own doppelgängers running amok.  This is an example of the "slippery slope" logical fallacy: that the cloning of animals (even a single animal cloned purely as an experiment) will somehow automatically lead to the cloning of humans.

So human cloning is seen as "bad" by most.  Why?  Part of it is an argument against hubris: that by cloning people, we are somehow "playing god" and meddling with Things Man Was Not Meant To Meddle With.  People also seem repelled by the individual hubris of people so vain that they might want to create copies of themselves simply to "live on" in them, more so than with the genetic mixing in "normal" children.  Finally, and most importantly in my view, are the as-yet-unknown risks to a cloned child.  277 cell fusions were required to produce Dolly, but only 29 viable cloned embryos were created, and only one survived to birth.  Even with genetic and technological advances over the past 14 years, the ethical consequences of creating so many miscarriages are simply too ugly for most respectable (and publicly-funded) research laboratories to seriously consider, and serious future health risks to the child are quite possible.  I imagine most people don't like the idea of creating a clone child simply as an experiment, to see what (if any) health problems it develops as a basis for future, healthy clones.

Fortunately, widespread cloning isn't likely to happen even if the technology is safe and available.  People are hardly lining up to be cloned, and cloning is a frequent target of biomedical ethics laws and international conventions.  Part of this is because cloning is such an easy target: unlike the divisive issue of abortion, since "everybody" sees cloning as bad, it's easy for a politician to score ethical points by denouncing cloning and vowing to ban it.  It also helps that doing so is effectively banning something that doesn't actually exist yet, which makes it all the easier to ban.  I wonder how many politicians actually know what cloning is and what we are (and aren't actually) capable of.

So at present, the ethical issues of cloning humans are something of a moot point.  But of course, those sci-fi movies continue to rear their ugly heads.  Sure, we upstanding, moral citizens might oppose cloning, but what about totalitarian nations eager to create clone-armies of their best soldiers?  Crazed dictators and kings with god-complexes who want to rule eternally though a clone lineage?  A nightmarish corpocracy where companies create, own, use, and sell clones as merchandise?  The potential misuses of cloning technology are endless, but are also presently more than a bit fanciful.

If human cloning does actually occur in the near future, it is likely to be the result of an unethical (and condemned) experiment by volunteers who are in it for fame and money.  The first cloned child is likely to be something of an oddity, and may become moderately famous.  But society is fickle, and there are no prizes for second place in science, so I doubt there will be a sudden wave of clones.  However, a far more sinister scenario, taking place a bit later, is for wealthy, morally-bankrupt people (perhaps the aforementioned dictators) to clone themselves using surrogate mothers, not to perpetuate their lineage but to ensure a perfect match for organ donations.  Clones created for such a dark purpose are likely to spend their miserable lives locked away, pampered but isolated, only to be used and disposed of as needed.  Outlandish?  I wouldn't put it past someone like Kim Jong Il or unscrupulous billionaires.

Still, I don't see this as becoming a major problem in society at large, at least not for a long time.  And even if the unfortunate scenarios I've outlined do take place, they are likely to be rare and hidden away by their perpetrators, like all despicable crimes.  I think most people can accept that a clone is not the same as the person they are cloned from; they are an independent human with their own mind and differences created by their life experiences.  A healthy democracy would not treat clones as slaves, property, or second-class citizens, but as normal people, no different from the way we treat identical twins or people with genetically-inherited handicaps.

To summarize: the possibility of cloning raises serious ethical and medical challenges, but cloning isn't likely to be problematic in the near future.