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 9.3

~Today I conclude my discussion of germ line modification, an inheritable form of genetic enhancement/engineering (G.E.), from the audio course Creating Humans: Ethical Questions Where Reproduction and Science Collide.  Previously, I’ve discussed some of the scientific, legal, and social consequences of this technology.  Now, I come to some philosophical thoughts about the implications of genetic enhancement.

What I find most interesting of all about germ line modification, the thing that makes it the most interesting reproductive technology from the course, is that it forces us to confront some of the deepest questions of human existence.  We all want what’s best for our children, but if we choose to make use of this technology, we must ask what exactly that means.  What do people really want out of life?  Why are we here?  Can direct genetic changes make life “better” for our children and humanity as a whole? 

The answers, if there are answers, are more complex (and interesting) that you might think.  As with all of the technologies I’ve discussed so far, the question is the same: where do we draw the line?  Most of us would likely not have a problem with engineering out fatal genetic disorders (e.g. Tay-Sachs).  But what about nonfatal but crippling genetic diseases (e.g. Lou Gehrig’s Disease)?  Again, I think most people would think it’s ok to prevent those.  Going farther, is it ok to remove obviously “bad” but not necessarily fatal or disabling problems, such as an increased likelihood of Alzheimer’s or breast cancer?   …again, I think most people would not really have a problem with altering the DNA of their unborn children to prevent them from suffering this, even if the fix in question concerns one’s mental capabilities (again, such as Alzheimer’s), rather than purely physical problems.

It’s when we move from the realm of “cure” or “prevention” to “enhancement” that people get squeamish.  While I think many of us are rightly uncomfortable with allowing parents to use genetic engineering to create specific physical traits such as height or hair and eye color, can we really object to parents altering an embryo’s DNA to be, say, resistant to HIV or other diseases?  Or to have less likelihood of developing diabetes?  Or to have teeth that won’t require braces?  Or to not develop severe acne? Or to be less likely to have poor eyesight?  To have more balanced cholesterol levels?  Or, if we colonize the Moon or Mars, to be more resistant to radiation?

I could go on and on, of course, but you get the idea.  Personally, I don’t really have a fundamental ethical problem with genetic enhancements like the ones I describe; the problem as I see it is societal, as I discussed previously.  I think people see germ line engineering, rightly or not, as an unavoidable slippery slope from small changes (removing the chance of a fatal genetic diseases) to overwhelmingly bad changes (creation of an oppressive genetic “master race” that will enslave us all!).  Genetic engineering, like the other technologies examined in the course, is merely a tool, one we would be foolish to outright ban or ignore.  Instead, making decisions about what can and can’t be done, what is and isn’t morally, ethically, and legally allowed, will be a long, complicated, and international effort.

But where use of this technology veers into the realm of mind-bending philosophical speculation is when we consider its power (not yet, but in the future), to affect not only our descendant’s physical traits, but their mental ones.  It’s from these that we recoil (consider my discussion of genetics vs. mind control from the previous post), but if that’s also your reaction, take a moment to ask yourself exactly why you find the idea so disturbing (“from the gut” is not an acceptable answer).  For example, consider the list of physical genetic alterations I listed two paragraphs ago.  Now ask yourself, is it ok for parents to genetically engineer their offspring to be less likely to develop severe depression?  Why or why not?  What about ensuring that one’s child is not born with severe retardation?  What about making sure the child is, in fact, highly intelligent?  Or has a perfect sense of musical pitch?  Or, for that matter, has a cheerful disposition?  I mean, we all want our children to be happy, right?  Right??

Consider the extremely disturbing implications of this research paper.  Here’s the abstract (colors added for emphasis):

• “Happiness or subjective wellbeing was measured on a birth-record based sample of several thousand middle-aged twins using the Well Being (WB) scale of the Multidimensional Personality Questionnaire (MPQ). Neither socioeconomic status (SES), educational attainment, family income, marital status, nor an indicant of religious commitment could account for more than about 3% of the variance in WB. From 44% to 53% of the variance in WB, however, is associated with genetic variation. Based on the retest of smaller samples of twins after intervals of 4.5 and 10 years, we estimate that the heritability of the stable component of subjective wellbeing approaches 80%.”

In other words, whether or not one is “happy” most of the time is, believe it or not, largely a matter of genetics.  Now, I’m sure that many people, perhaps almost all people, are uncomfortable with the idea of altering the genetic code of their unborn children to ensure that said children are happy.  But why, exactly?  Because the child should be able to make their own choices?  But…what if they’re genetically predisposed towards being unhappy (or worse, severely depressed)?  We might say that civilization is built on unhappy people wanting to improve their lot in life, or expound on the brilliant art, etc. created by “tortured genius” types.  But is that enough of a reason to leave “sad” genes intact?  I mean, the whole point of civilization and so forth is to make us happier…right?  Can you really fault parents for not wanting their children to start life with this sort of genetically predetermined burden?

That’s why I find the philosophical dimensions of germ line modification so fascinating.  It makes us ask what we (speaking through our unborn descendants) really want out of this life that we’ve all been thrust into without our consent.  Why are we here?  What’s the point?  Is it to suffer, endure our lot, and take what we can get?  To worship and praise a deity? To free ourselves from suffering?  To find meaning in suffering?  Is it to enjoy each moment as best we can?  To learn things?  To help others (…to enjoy themselves?)?  To uncover the secrets of the universe?  To perpetuate our genes by having children?  To rebuild a shattered God?  To find True Love?  To just make it to the weekend??

…because if any of the above reasons sounds like a good, or even acceptable, meaning for life, I think it’s intellectually dishonest to dismiss germ line engineering, even for…no, especially when it comes to influencing the mental and personality traits of our descendants.  If you think we’re here to enjoy life & control our suffering, and have the capability via G.E. to make it even a little bit more likely that your children, grandchildren, etc. are more likely (and remember, this is all tinkering with probability, not certainty) to enjoy their lives regardless of external circumstances, is it your duty to do so?  Should it not, in fact, be one of your top priorities if you could do it?  And if you think we’re here to learn more about the world, then shouldn’t you ensure that your child is smart?  But if you increase your child’s intelligence, are you possibly decreasing their happiness?  Does making them more likely to be happy make them less likely to be productive/ambitious?  Should we strive for ambitious children?   …I could go on for hours!

Honestly, the only real objection I can ultimately see (assuming we actually acquire a reliable, non-experimental understanding of this technology) is religious: that we shouldn’t mess around with human DNA because God, etc. etc.  And I think that’s the position that a lot of people will take, but not for the same reasons.  Some people that feel this way will, I hope, actually take the time to think about why their religious/philosophical beliefs prohibit such alterations.  But I think that a lot of people will retreat into religious objections (not only for G.E. but for many of the other reproductive technologies from the course), simply because it’s easy to do so.  Although I find these sorts of ethical dilemmas fascinating, I know that most people don’t; they just want simple, easy-to-understand solutions to challenging ethical problems.

With it’s strong, almost overwhelming religiosity (especially in politics), the United States is especially prone to this, and I think that will make it difficult for us to have a real, national dialog to decide on these and other important bioethical issues.  It will make it even more difficult to involve America in an international framework to regulate and enforce the decisions we are able to make.  Because, like all the other reproductive technologies, regulation of them is useless without international conventions; otherwise, those with the means to do so will simply travel to genetic clinics in nations or other areas (or perhaps hospital ships in international waters?) where G.E. and so forth is legal or uncontrolled.

As for myself, I’m terribly torn on the issue of germ line engineering.  Part of me sees this technology as one of the great hopes for humanity’s future, bringing with it the eventual promise of freeing humanity from a great deal of painful evolutionary baggage that we’ve accumulated over millions of years, but which now weighs us down.  It’s a vision of a world in which people don’t die from fatal genetic diseases, or are born with diabetes, or get Alzheimer’s and thousands of other health issues, and where people don’t need to get braces for their teeth or backs or legs, or wear eyeglasses, or get zits (…but would that be considered beautification?), or die from cancer in their 30s, or take drugs for genetically-induced depression, anxiety, blood problems, and so forth.  A world where people are healthier, happier, and live longer even without expensive pharmaceuticals or therapies, even if we all went back to living in caves.  Such modifications to the human genome are certainly “unnatural”, but is the world I describe really so bad?

However, with so many emerging technologies, science fiction has a half-century advantage on us.  Genetic engineering is a time-tested staple of speculative fiction.  In general, owing to the need to create dramatic plotlines, it’s generally depicted as a bad thing.  Star Trek, for example, postulated “Eugenics Wars” in the near future (i.e. the 1990s) led by genetically engineered “Augments” such as KHAAAAAAAN!, leading the outlawing of genetic enhancement in the Federation.  S.M. Stirling’s Domination novels take the use of G.E. to create a “master race” to a horrifying conclusion, with humanity divided between the “Draka” rulers and their “Servus” slaves.  The Japanese show Gundam Seed depicts a world divided between genetically-enhanced “Coordinators” and unaltered “Naturals” mostly on Earth, with massively destructive wars (which, naturally, involve giant robots) waged between the two groups. I think these scenarios speak from our visceral fear against altering the fundamental nature of humanity.

Although the worlds they depict are extreme, I think they make some good points about the social and legal dimensions of G.E. If we allow free, or even limited use of this technology, will we have to keep track of who’s been enhanced?  Should people whose physical capabilities (such as strength, speed, etc.) have been genetically enhanced be barred from the Olympics?  What about the Tour de France?  What about professional sports?  College sports?  High school swim teams?

And what of those whose brains have been enhanced, giving them, say, a better memory or savant-level math skills?  Should they be forced to disclose this on college applications?  What about job applications?  Should there be a box that you have to check if you’ve received G.E. (whether in the germ line or in a somatic cell line sense), and if so, disclose exactly how?  Will non-enhanced people need some sort of affirmative action law?  Or is that too much government intervention?  Should those who can afford it be free to use G.E. on themselves or their children?

As you can see, the ethical, legal, social, and even philosophical implications of genetic enhancement are mind-boggling.  But the genetic genie may very well have already left the bottle.  As a society, we can’t simply stick our heads in the sand and pretend this technology doesn’t exist; nor, I believe, will we be able to effectively ban it entirely even if we wanted to.  It’s going to be used, one way or another, but exactly how we decide to use it will be one of the most important issues facing humanity over the next century.

So what do you think about all this?  Should we allow G.E. or not?  To what degree?  Would you use it if it were available?  Why or why not?

Creating Humans: Ethical Questions, part 9.2

~A far more controversial form of genetic engineering is germ line modification, also called germline engineering.  This is a catch-all term for any changes in a person’s DNA that will affect their descendants regardless of use of any other genetic engineering.  If the genetic engineering affects a patient’s reproductive system (i.e. their gametes), it would be considered germ line modification.  Another example would be if the DNA of an in-vitro fertilized embryo is altered in a lab prior to implantation into a womb; the resulting child would then carry the engineered changes, and pass them on to his or her offspring.

Germ line modification is not yet technologically feasible, but as biotechnological research progresses it will quickly become so.  Understandably, this type of technology, although it remains theoretical for now, is highly controversial.  First of all, there’s an inherent concern that it will provide an unfair advantage to children whose parents have them enhanced.  As I’ve mentioned before, most of the reproductive technologies in this course are and will be the domain of the wealthier people and nations of the world, and modifying the DNA of offspring seems, to many, to create an even more unbalanced playing field in the arena of life.  Some fear this will lead to a genetic aristocracy or hierarchy; for example Aldous Huxley’s novel Brave New World features hatchery-raised children genetically slotted into genetically-determined roles within society, with the brilliant “Alpha-double-plusses” ruling at the top and the “Epsilon semi-morons” doing manual labor.  The film GATTACA also features a society divided on the basis of genetics, with genetically “inferior” humans relegated to menial roles.

But consider: the children of wealthy families (whether in one’s own nation, or compared to families of poorer nations) are already born with huge advantages over their less-wealthy “peers”.  The Declaration of Independence may assert that All Men Are Created Equal, but strictly speaking that’s only in a legal sense (and only for white male landowners); the moral sense is far more fungible.  Do you think it’s right that some expectant mothers receive excellent prenatal care and nutrition, while other mothers give birth on their own with no medical treatment and babies born half-starved into a life of malnutrition?  That some children receive excellent medical care and educations, while others have nothing? Of course it’s not morally “right”, but the entire history of human civilization is one of inequality.  The question here is, does germ line modification go too far, and if so, why?  What makes it different?

I think a major objection to germ line engineering is suspicion of parental motives, whether for the aforementioned class division or because nudging genes around can unduly influence a child towards a particular course in life, especially if you alter genes affecting personality or mental capabilities.  Most people are uncomfortable with altering the very nature of a child to force them onto a specific path; it seems to much like brainwashing.  Yet consider: human society universally acknowledges the right of parents to intervene in the lives of their children, in many cases strongly influencing (and yes, even forcing) into certain situations, careers, marriages, and so forth.  Is it really any of your business if a family chooses to engage in genetic enhancement to increase the chances of their child doing better in a particular area?  Remember, genetics is not mind control; nature may be stronger than nurture most of the time, but environment still plays a significant role in the development of a person.

Also, consider that humans have been genetically “enhancing” plants, animals, and yes, our own children, since before the invention of agriculture.  We’ve bred docile cattle, loyal bloodhounds, nutritious vegetables, beautiful flowers, prettier children, and more, but until recently, it’s all been mostly haphazard.  We hope that the person we marry and have children with will prove a good genetic match and that our children won’t have genetic disorders.  We hybridize two flowers, hoping the result will be both attractive and viable.  We breed racehorses until we get a winner.  But now, with an exact knowledge of the genetic code, much of the guesswork can be removed or minimized, and we can simply go about what we’ve been doing all along, but with more precision.  Or so the logic goes.

Another argument against germ line modification is vaguely fatalistic, often with religious overtones.  The idea here is that by altering The Very Basis of Life, we are tampering with Things Man Was Not Meant To Know (yes, I enjoy capitalizing clichés).  Some feel that directly altering DNA is “unnatural” and tantamount to meddling with the handiwork of God, saying in effect that we know better than Him and that the lives we are “given” are somehow not good enough. 


While there are many good arguments against germ line modification, I find this argument weak.  I mean, we’ve already altered existing species and driven other species into extinction.  We’ve already altered our environment and living conditions precisely because they weren’t good enough for our needs.  How is altering our genetic code, which is full of evolutionary baggage and problems, any different? 

Also, it’s both callous and ridiculous to take a family whose line is plagued with a particular genetic defect (for example, hemophilia) and say that their affliction is the handiwork of a deity, so their descendants must piously suffer it.  Are the other reproductive technologies discussed in the course (IVF, surrogacy, donation, screening) equally “unnatural”?  What makes them different?

Like so many ethical controversies, this is hardly a new dilemma.  I periodically read or hear about families who refuse vaccinations and/or medical care for their children on religious grounds, saying that only God has the power to heal, etc.  In an era of plane travel and increasingly disease-resistant microbes, society may eventually be force to deal with vaccine refusers who may inadvertently spread diseases.  Do you think it’s ok for a family to refuse medical treatment for an ill child, or refuse to vaccinate them, on religious grounds?  Should the parents be legally culpable if the child dies from a lack of treatment?  Many (including myself) think the parents should be held liable.  Yet vaccinations are an alteration of one’s body.  So is medical treatment.  How is germ line engineering to prevent genetic diseases so different?  And it that’s ok, where do we draw the line from “treatment” to “enhancement”.  Should we draw a line, or leave it up to the parents?

I’ve barely scratched the surface of genetic engineering controversies, and I’m not done with germ line engineering just yet.  Tomorrow, I’ll go into what I find to be the most interesting aspect of this technology: how it forces us to confront the deepest and most profound questions of our own existence.

Creating Humans: Ethical Questions, part 9.1

~Continuing my course analysis of Creating Humans: Ethical Questions Where Reproduction and Science Collide, the next topic is genetic enhancement.  Of all the topics examined in the course, this is the one that interests me the most in its ethical, social, legal, and scientific implications.  And of all the reproductive technologies we’ve looked at, genetic enhancement is the most fundamental, directly altering the nature of a living creature at the molecular level. 

 

From the discovery of the double-helix structure of the DNA molecule to the completion of the human genome project, researchers have barely begun to scratch the surface of how miniscule changes in our DNA can result in profound changes.  We’ve learned that genes can even be switched on and off in response to other factors (such as hormones).

 

As I discussed earlier, the terms "genetic enhancement” or “genetic engineering” often leave a bad taste in people’s mouths, tainted as they are by the legacy of the eugenics movement, which was largely based on sterilization and pseudoscientific/nationalistic ethnic stereotyping.  It was particularly hard-hit by World War II and the Nazi “Master Race” ideal.  Some people react to the idea of genetic enhancement with scorn, saying that in the hands of a dictator or Nazi-like group it could be devastating.  Although that’s a valid view, recent advances in genetic technology have revived eugenics as an individual choice, rather than a social policy, making the idea of genetic engineering  more acceptable to many people.

 

Broadly speaking, there are two different types of genetic enhancement.  The first is somatic cell line engineering, also called gene therapy, which affects the genetic code of an individual patient.  Trials are still underway regarding the efficacy of gene therapy, and results have been both promising and disappointing in different cases.  An example of a recent promising gene therapy study involved implanting certain genes into the joints of patients afflicted with rheumatoid arthritis.  In response to the genes, the patients’ bodies produced a protein that, in turn, blocked the action of the protein causing the arthritis.

 

In general, somatic cell line engineering for medical purposes is not a morally controversial subject and is therefore ethically acceptable. Think of it as a form of medicine that may help cure genetic diseases or conditions; although the treatment may be dangerous and/or useless, so is taking experimental medicines.  The risk, and resulting changes, affect only the individual.  And so far the changes we can create are small; we’re still a long way from creating syfy mutants with extra arms or super-soldiers with incredible combat skills simply by injecting someone with some genes (although that would be awesome).

 

However, somatic cell line engineering is quickly becoming an issue in athletics, where it is known as “genetic doping”.  Although the efficacy of such “doping” is questionable at best and certainly high-risk, unscrupulous athletes will use any advantage they can get, and genetic doping has the advantage (for now) of being undetectable, unlike testing urine for traces of steroids.  The International Olympic Committee formally banned gene doping in 2003, but it may be only a matter of time until the first genetic doping scandal erupts.  Will it be in baseball?  Swimming?  Perhaps the Tour de France?

 

Tomorrow, I will discuss germ line modification, a far more controversial form of genetic engineering.  For now, here’s a link to the Human Genome Project section on the Ethical, Legal, and Social issues surrounding genetic knowledge and engineering.

Creating Humans: Ethical Questions, Parts 6 & 7

~Lectures 6 and 7 of the course discuss the ethical and legal issues surrounding abortion and surrogacy, respectively.  I've already covered most of the thorny issues surrounding the ethics and legality of abortion, and it's a depressing topic to revisit, so I'll be brief.  The lecture reiterates that the "debate" between moralistic crusaders consists of two utterly irreconcilable positions, while the actual laws in most countries are an elaborate series of legal compromises.  The lecture did, however, note that the rate of abortion in nations with few restrictions vs those nations with tight or full restrictions are actually not that different.  To the moralist, this fact is irrelevant: the principle of the position often outweighs the actual effects of enacting such a principle on either side of the debate.

I see the ossified abortion debate as a form of smoke and mirrors, masking more challenging, less clear-cut moral issues.  Instead, marching in pro-life & pro-choice rallies and so forth is an easy way for protesters to feel better about themselves on what they see as a clear moral issue.  After all, if the abortion question was "solved" to the satisfaction of one side or the other, those same marchers might have to put just as much effort into other moral issues such as poverty, corruption, and social justice -- things that most people just don't want to think about or deal with.

The importance of these other issues is masked or otherwise ignored by the imperative that because abortion is the murder! of helpless children! or a violation! of a woman's rights! over her body!, the issue renders all other moral issues utterly irrelevant by comparison.  In other words, many people seem to feel that because abortion is so important, all other issues must remain on the back-burner until abortion is legally "solved" (not going to happen...).  I find this to be a dangerous and manipulative way of looking at the many ethical challenges humans face today

Moving on, surrogacy is a fascinating area of medical ethics and laws, and contains many possible and actual problems that society and the law are forced to confront.  The origin of surrogacy -- having a woman bear a child for another couple -- stretches back thousands of years.  For example, the book of Genesis in the bible tells the story of Sarah, wife of Abraham, who was unable to conceive a child.  To "solve" this problem, she gave her maid, Hagar, to Abraham, so the maid could have his child, which would be raised by Sarah.  Obviously, Hagar and Abraham used a controversial (to say the least) standard method of surrogate insemination, but surrogacy in the modern sense usually refers to the use of in-vitro fertilization, allowing a woman to bear a child for another couple, while not herself being genetically related to the child.

Even with technology removing the sexual aspects of surrogacy, the practice is still controversial.  Some feel that surrogacy is a commercialization of reproduction, which, being such an intensely personal and private act, should not involve a third party.  We saw this same argument earlier in the course, during the discussions of genetic donors.  But surrogacy is a far more obvious, in-your-face commercialization: a couple pays a woman (almost always a less-well-off woman) to bear a child for them.

The question here is: does surrogacy result in children becoming a commodity?  Is it ever acceptable to pay money for a child?  Of course, a proponent of surrogacy would argue that the payment is not for the child, but for the services of the mother, much in the same way that an adoption fee is not tantamount to buying a child (such as buying a slave might have been).  Our modern legal system clearly distinguishes between parental rights and ownership rights; parents have near-total control over their children, but do not own them and cannot sell them.  What do you think?  Is it acceptable to exchange childbearing services (in a crude sense, to rent a womb) for money?

This involvement of money for services can create the perception that surrogacy is exploitative, because in almost every case it involves a couple paying a less-economically-advantaged (i.e. poor) single mother to bear their child.  Some would say that this is market economics at work, but is it really alright to allow it for reproductive purposes?  What do you think?

Another argument against surrogacy is that even though the child is not genetically the offspring of the surrogate mother, parenthood is so strongly ingrained into us that many find it disturbing that a mother would ever give up a child she bore in exchange for cash.  This becomes an even more difficult issue when you consider the question of whether or not a surrogate mother has any legal rights or legal relationship to the child she bears.  Consider the example of a surrogate mother who agrees (and signs a legally binding contract) to bear a child for a couple, but upon having the child, finds herself so attached that she no longer wants to give it up.

While the contract may be binding and enforced by the law, many people would find it very difficult to literally pull a child out of its mother's arms and hand it off to another person.  Whose moral rights are stronger, the genetic donors', or the surrogate mothers'?  What do you think should happen in this scenario?  Does the law trump all emotional considerations, or should there be exemptions?

Surrogacy laws by state in 2007.  It's not easy to read, but note that the white states have no regulations covering surrogacy.  See this page for details by state.

The lecture brought up the fascinating (and again, disturbing) example of the Beasley-Wheeler dispute.  In this case, a British legal secretary named Helen Beasley agreed to be a surrogate mother for the Wheelers, a couple living in California, in exchange for $19,000.  Embryonic implantation went normally until the seventh week of Beasley's pregnancy, when she discovered that the embryo had divided into twins.  The Wheelers requested that she abort one of the fetuses (!), as the contract they'd made with Beasley stipulated that she bear one child for them; the Wheelers didn't want two.  Beasley sued them in court in 2001 to terminate the Wheeler's parental rights and collect the unpaid fee; she found another family to pick up the contract and adopt the twins.

While I haven't been able to find the outcome of this case (perhaps it hasn't been resolved, as the wheels of justice can grind more slowly than those of Amtrak), it shows how complex surrogacy can be.  I imagine that most people, upon reading the above paragraph, would be horrified at the behavior of the Wheelers and consider them bad people for not agreeing to take both children.  Whether or not you agree with this assessment, it shows the weakness of the law in this area.  In many states and nations, there are few or no laws explicitly regulating surrogacy to prevent these sorts of practices.  Do you think there should be?  Or would that be an unacceptable government interference in the market for surrogates?

Finally, we must consider the legal rights of children born to surrogate mothers.  Does a child have the right to know that they were carried by a surrogate?  Most of us would agree that an adopted child has the right to know that he or she was adopted, and to know the identity of his or her biological parents.  Is surrogacy different? How so?

Modern IVF-assisted surrogacy, like many of the other reproductive technologies in this course, are still in their infancy and the law has, in many cases, not caught up with the available technologies.  For example, the above chart shows that the legislatures of many U.S. states haven't taken up the issue of surrogacy or are unwilling to do so.  The Beasley-Wheeler dispute (which was between a British woman and an American couple) also shows us yet again that laws regulating reproductive practices can only have a real effect if they are international conventions; otherwise, bans on practices such as abortion, surrogacy, genetic enhancement, and so forth can be easily flouted by those with the means to travel to places where such practices are allowed.

I hope this lecture analysis has made you think about the legal and ethical dimensions of some highly controversial subjects.  My next lecture analysis will be on the fascinating issue of pre-natal screening, so look forward to it!

Creating Humans: Ethical Questions, Part 5

~Our next lecture in the course is about gender selection.  The first major idea is that despite technological advances in reproductive technology, gender selection has been going on for a very, very long time, usually in favor of male children.  Many societies, both past and present, either overtly or subtly favor having male children, or at least more males than females.  There are many reasons for this: the need for a male heir to carry on the family line, a greater perceived usefulness of a man in a labor-intensive and/or violent society, an unwillingness to pay a dowry for a daughter, and (perhaps most importantly) the tradition of sons caring for their parents in their old age.

For most of human history, the practice of gender "selection" was simple and brutal: infanticide (often by exposure).  But within the last few decades, the widespread availability of ultrasound technology has enabled gender identification in relatively early stages of pregnancy, widely influencing the decision of whether or not to abort.  Although many regard abortion as morally equivalent to murder, there are many who don't, and even for those that are squeamish, it's presumably less agonizing to abort an unborn child than it is to kill a newborn infant.

With this technology has come a significant and subtly dangerous side-effect: a gender imbalance in some societies.  The two nations most affected are India and China; the latter was especially affected by the One Child policy instituted in 1979 to control China's rapidly-rising population.  When you combine a society in which families need a son for a variety of cultural and economic reasons, with a policy harshly penalizing families that have more than one child, you end up with a lot of boys, and fewer girls.  Adding to the problem of gender imbalance is the transfer of unwanted girls to foreign parents via adoption; 99% of such foreign adoptions are of girls.

Although the One Child policy has been largely phased out, the gender gap was created over decades and has yet to play out.  But is a gender imbalance in a given population really a problem?   Consider this:  In 2009, for every 100 girls born in China, 119.5 boys were born (the usual ratio is 105:100).  By 2020, the nation is expected to have 24 million men of marriageable age unable to find a wife.  The effects are already being seen: a rise in the trafficking of women from other countries, increased migration (and overpopulation) from rural to urban areas, economic strains as elderly single men have no family to support them, and possible correlations to increases in crime.  While some have argued that the gender gap helps empower women (as they are in a better bargaining position for selecting a mate), others have argued the opposite (i.e. the aforementioned trafficking of women).

I think it's reasonable to assume that a healthy society has a fairly equal ratio of males to females.  Significant gender gaps correlate to societal problems, while extreme gender gaps (often the subject of speculative fiction), are disastrous.

The problem is widely recognized, and there have been steps to correct the ratio.  For example, China has outlawed sex-selective abortions (although the problem persists), and the nation is attempting to reform its pension system (leaving the elderly less dependent on sons to care for them in their dotage).  Assuming gender-imbalanced nations can weather their gap-related issues, I think (hope?) the problem will eventually solve itself as cultures mature towards equality of the sexes, where girls are as valued just as much as boys.

Now, consider this question: given the effects of a gender imbalance, is sex selection ever ethically acceptable?  I think many people, especially readers from Western nations, would quickly come to the conclusion that it is not, and that it should be illegal (or at least severely frowned upon), even for pre-pregnancy procedures such as In-Vitro Fertilization.  However, remember that it's very, very easy to judge others when we ourselves are not faced with the same problems.

Imagine a poor farming family in rural India with several daughters and no sons.  To have the girls marry well, dowries must be paid, and the family has no savings or pension for their impending old age, and equally-poor relatives.  If the means are available, can we really blame the parents for ensuring their next-born child is a boy?   The course presented another difficult scenario: a married woman in a misogynist culture (I'm looking at you, Saudi Arabia), who has given birth to several daughters, angering her potentially-violent husband who wants a male heir.  Can we really blame her for using assistive technology to ensure her next child is a son?  Is sex selection always wrong, or are there cases when it might be acceptable?

Summary:

• Gender selection is an old issue that has been a problem for a long time, and some cultures are still adjusting to its effects.  Although the morality of the issue may seem clear-cut to many, as with so many ethical issues, it's important to take personal and cultural realities into account before we condemn.

• A better approach to the problem is to focus on the underlying societal pressures which cause parents to practice sex selection, rather than condemning the practice outright.  For example, pension reforms to support the elderly in developing nations, giving parents there less reason to prefer having a boy.

Creating Humans: Ethical Questions, part 1

~To pass the time, lately I've been listening to audio courses in the Modern Scholar series, which I obtained from (where else?) the library. I've finished Ideas that Shaped Mankind, which was very enlightening, and now I'm working on Creating Humans: Ethical Questions Where Reproduction and Science Collide. The course lecturer (and reader) is none other than Alexander McCall Smith, who, aside from authoring the best-selling No. 1 Ladies' Detective Agency series of mystery novels, is also one of the world's foremost authorities on medical law and ethics.

Unlike the course in Ideas that Shaped Mankind, Creating Humans deals with extremely controversial questions that arouse intense feelings in some people over pertinent issues of intervention in the process of human reproduction. Some of the issues everyone has heard of and most have a strong opinion on (for example, abortion rights). Other issues fall into a more ambiguous ethical category, or are simply not something most people think about (for example, prenatal screening or the ethics of surrogacy or intensive care). And some emerging technologies will have a significant impact on human society. As for myself, the topic of ethics and technologies in reproduction has special significance because I have two young relatives who would not exist without the use of technology that did not exist scant decades ago.

It's up to us, as a nation and as a species, to decide how we're going to deal with these issues. Some people simply don't want to deal with the difficult questions of reproductive ethics, so their solution is to ban them all (such opinions are often religiously motivated). At the other extreme are those who think that reproduction is such an intensely private matter that nobody has the right to interfere with parental choice, and that whatever they decide to make use of is their own business. In listening to McCall Smith's lectures and considering the questions in the course guide, I believe the best (indeed, the only practical) response falls between the two extremes. Some of these technologies arouse little protest and have little potential for harm, while others are potentially very dangerous and need to be carefully regulated to prevent harm to both the resultant offspring and to human society as a whole.

All of what I've written up until now is a very broad outline of what the course is about, but I will soon get into specifics. For each of the fourteen lectures in the course, I've taken notes and written my own observations, thoughts, and questions -- which I would like to share with you, my dear readers. In some cases, I've drawn conclusions about how I feel and what I think should be done, but in general the complexity of the issues defies a quick and easy solution. I would love to hear (via comment or email) what you think about these issues, regardless of whether or not you agree with me. If you'd like to follow along, you can download a course guide from the course web site; if you want to know more, you may be able to find this course at (where else?) your local library. I've tried to divide up information and questions from the lecture from my own thoughts; the former are paragraphs, the latter are bulleted.

And so without further ado, here are my brief thoughts on...

--Lecture 1: An Overview of the Techniques for Creating Humans--

As the title suggests, this first lecture is a broad survey of current technologies for reproduction, including sperm and egg donation, in-vitro fertilization (IVF), surrogacy, and cloning (in the near-future). Each issue creates separate legal and social issues, and the emotional reaction to each is often very different. Most opposition to these technologies comes from those who feel, correctly, that the use of such technologies is somehow unnatural.  But what is really "natural" in human reproduction and raising children, especially from a legal perspective?

• What seems to bother people most is not so much the actual techniques -- the "mechanics" of various assistive technologies -- but rather the social and personal implications. Imagine, for a moment, a future society that births children in hospital "hatcheries" (such as in Huxley's Brave New World). If these children are raised communally and indoctrinated with drugs to control their development as they were in the novel, well, most of us would be horrified. But if the children were adopted into loving families who care for them as families do now, well, it's still unnatural...but not so bad.

• As another example, suppose a couple in which the man is infertile chooses to use donated sperm to have a child via IVF: is this a form of adultry -- legally, morally, or religiously? Who is the "real" father in this case? I suspect that, aside from deeply-held religious objections, this case is not really a difficult moral problem, because our society's definition of "fatherhood" is broad enough to encompass someone who is not genetically related to their child. Like a mug in my parent's cupboard attests, "Anyone can be a father, but it takes someone special to be a DAD."

What, if any, responsibilities (legal or moral) do donors have to their biological offspring?

• This is covered in much greater depth in a later lecture, but it bought to my mind a frightening aside from the novel Next by the late Michael Crichton. In this brief side-story, a wealthy businessman finds himself suddenly confronted by a young woman claiming to be his daughter, created from sperm he donated to a sperm bank when he was in college. The man isn't sure how to deal with this, but the woman is: she has a lawyer, and her eyes are on the cash -- she claims that he has a legal and financial obligation to provide for her.

Is it acceptable for a single woman to use donor material to have a child? Of course, single women have children all the time, but assistive technology allows for the possibility of children without a father playing any role at all in the relationship. Is that ok? Although studies have shown that children benefit from having two parents when growing up, is this evidence strong enough to consider children as having a "right" to a father?

• I think any legal attempt to limit this would be absurd; after all, we don't expect pregnant women whose parter/husband dies before the child is born to remarry, much less legally obligate them to do so.

Similarly, donor material allows for two women in a relationship to have children. With donor material, a resulting child would only be genetically related to one of the women, but new technology may allow for the child to actually be related to both. Do you think it's ok for a lesbian couple to raise children of their own? What about two men -- is it ok for them to adopt? Most objections to this are from those who believe that such couples aren't fit to raise children. Others fear that children raised by a homosexual couple will themselves be more likely to become gay (studies have largely disproven this) or will somehow be maladjusted (studies have also disproven this), while others simply dislike the deviation from the "natural" family on emotional or religious grounds. Here is a good summary of the debate.

• I personally see no harm in allowing such couples to raise children; these days, stable two-parent mom 'n dad families are becoming the ideal rather than the norm, and plenty of children are raised in "non-standard" family units. If a couple that is biologically incapable of producing offspring cares enough to go through the difficulties of having a child via technology or adoption, they're probably more committed to lovingly raising a child than many other couples (or single parents) are. While many people will disapprove of allowing such families to exist at all, I see no need for legal restrictions.

More questions to think about from this lecture:

1. Can the use of reproductive technologies be equated to life support for the terminally ill? They're both an "unnatural" intervention in life. (This issue is covered in much greater depth in a later lecture).
2. Is the availability and use of reproductive technology good or bad for society as a whole? If we somehow could, would it be better to just forget all about them and never use them?
3. Are children conceived via technology somehow unnatural themselves? Are they less "human" than naturally-conceived children? Many works of science-fiction depict dystopian futures were clones are somehow sub-human, or those who haven't (or have) been genetically enhanced are treated differently by society and the law. Is there any truth to this? Should they be treated differently by the law? Why or why not?