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, part 8

~The next lecture in Creating Humans: Ethical Questions Where Reproduction and Science Collide is on the subject of reproductive screening. This practice is highly controversial, in some ways even more so than abortion, because it plays upon our imaginations with questions of what might be and what could be. Some people believe that failing to screen is irresponsible, while for others, the practice is horrific and nothing less than a crime against humanity.

So what is this "screening", anyway, and what's the big deal about it? Prenatal screening (or antenatal screening) is testing for diseases or conditions in an embryo or fetus before it is born. There are many ways to do this, ranging from DNA analysis of a fertilized embryo in a lab prior to implantation, to taking blood samples from a fetus in the womb, to the use of ultrasound. Broadly speaking, there are invasive procedures (which involve taking actual samples from a fetus), and non-invasive procedures (just about everything else).

The reason that people have screening performed is that it provides an enormous wealth of information on the future child. With our knowledge of genetics growing every day, screening tests allow parents to learn not only the possible medical conditions and abnormalities their future child may have, but also broad physical characteristics such as hair color, expected height, and of course gender. The ability to determine mental characteristics such as intelligence may not be far off, although the complexity of that subject merits a discussion all of its own.

Screening is most often used by affluent individuals or ethnic groups who are genetically predisposed towards a certain defect. The classic example are ethnic Ashkenazi Jews, whose offspring have a significantly higher chance than most other groups for Tay-Sachs disease, a painful and incurable genetic disorder that kills by around age four. Successful prenatal screening can prevent children from being born with this disease. Other disorders commonly screened for include neural tube defects (such as spinal bifidia) and Down's Syndrome.

So now we come to the mind-boggling ethical dimensions of this technology. The potential uses (and misuses) of this technology are tremendous. The key question is: what should we, as a society, allow in screening? Here are some questions that you should consider:

• Is there a moral difference between screening (and discarding) an embryo in a lab, and screening (and aborting) a fetus? Why or why not?
• Is it acceptable to screen for fatal genetic disorders such as Tay-Sachs disease? Or should we accept and cherish all children, knowing in advance how short and painful their lives will be?
• Is it acceptable to screen for non-fatal genetic disorders? What about spinal bifida, which is not fatal but causes paralysis and requires extensive surgeries? What about Down's Syndrome?
• Should financial considerations play any role in screening? Do more affluent families bear greater responsibility to raise children with serious defects? Are less affluent families justified in choosing not to have such children because they cannot pay for the necessary care?
• Is it acceptable for would-be parents to screen for a desired gender or specific physical characteristics? Why or why not?

As you can see, the corollary to the main question of what we should allow is, where do we draw the line? We can say we don't want to allow screening based on, say, hair color, but we can hardly force a woman to implant an embryo inside her if she doesn't want to do it, now can we? Ultimately, this comes down to one more question: to what extent does that state have the right to withhold information from parents?

By this I mean that any regulation of screening will ultimately involve forcing a reproductive screening technician to not tell his or her client(s) certain information about their future child. Technicians might know the gender, hair color, eye color, height, intelligence, predisposition to Alzheimer's, etc. of the child, but should they be allowed to tell the parents all of this if it might influence the decision to have or not to have the child? Or does this kind of enforced regulatory ignorance undermine the very personal decision to reproduce in a free society?

Most discussions about screening are saddled with the historical baggage of eugenics. In the old sense of the word, eugenics was a Social Darwinist belief adopted by certain state and local governments to "improve" society, primarily through the sterilization of those deemed defective or otherwise inferior by those in power. Exactly what constitutes inferiority, and how far some governments were willing to go (i.e. Nazis) varied broadly. Today, most of us would consider the forced sterilization of certain social groups to be abhorrent, but unlike old-style eugenics, screening is (at least for now) a personal decision. Ultimately, state regulation of screening will be not about forced use (i.e. mandatory sterilization), but forced restriction (of the use of screening and information divulged to parents).

I imagine those who consider the question of screening fall into three categories:

1. Moral/religious absolutists, who are absolutely against all types of screening, period. This category also includes those who simply don't want to deal with the challenges this technology brings, and hope that it can be legislated into nonexistence.
2. Those who think screening is acceptable, but only for severe or fatal genetic conditions.
3. Those who think screening should be left entirely to parents, without any restrictions.

So ask yourself: where do you fall in this spectrum, and why? As for myself, I (like most, I imagine) fall into category 2. I don't have a problem with screening for severe defects, but I don't think people should be allowed to screen for specific characteristics or genders. My reasoning on this is not so much that it is somehow morally "wrong", but that perhaps we shouldn't be so quick to get rid of "defects" that, while detrimental to the individual, may offer benefits to the group. Consider the resistance to malaria granted by the otherwise-painful condition of sickle-cell anemia, not-so-coincidentally found highest amongst those of African descent (malaria still being a major problem in Africa). Or the surprising resistance to cancer among those with Down's Syndrome. Pardon my rapier-edged verbal wit, but I think we must be careful not to throw the genetic baby out with the bathwater.

There is another reason we ought to be very careful in selecting physical traits via screening. In his book Our Posthuman Future, Francis Fukuyama suggests after a few generations of unrestricted access to this technology, you'd be able to tell from looking at someone whether or not they're a product of screening. Will this create a sort of genetic aristocracy, with pretty, smart, healthy "genrich" on one side and everyone else on the other?

As bizarre as that outcome may sound, I believe that a discussion of screening forces us to confront a far more immediate problem. Although I have said that this technology, like the others in this course, remains the province of the wealthy, they are becoming increasingly accessible throughout the world (consider the use of ultrasound in sex selection in dirt-poor rural India that I discussed previously). Increasingly, health insurance plans, whether public or private, are offering options for prenatal screening. As access to information about our future children becomes increasingly available (and in increasing detail), we must re-examine this question: does society have any obligation to support families of children with severe genetic problems? This becomes especially problematic if the child is known to have problems in advance, but the parents choose (or are forced) to have it anyway. Many would applaud (and enforce) such a decision, but without considering whether they and the rest of society bear any obligation to help out. Do they?

In the United States, the answer is no. If a child is born with a severe defect, treatable or otherwise, it's up to the family to meet the often-exorbitant medical costs. If the family is not wealthy, health insurance/medicaid and charity may cover treatment, or it may not. This sort of thinking makes a lot of people uncomfortable and inevitably descends into political squabbles about the viability or lack thereof of national/socialized health care systems. Those who argue against such coverage for children adopt a fatalistic approach: people have been having children with problems for all of history, and society responds with charity and so forth, but it's the responsibility of the parents to care for whatever child they have. If the child receives inadequate treatment, it's the fault of the parents (unstated: for being poor yet reproducing), not the fault of the child.

Do you think this is a good answer? Does charity always meet the needs of children with medical problems? Should a child pay the consequences of being born into the "wrong" family if they need treatment but can't get it? Is that Just The Way Things Are, and The Way They'll Always Be?
Stephen Hawking is widely acknowledged as one of the world's most brilliant astrophysicists, but he developed Lou Gehrig's disease which has almost completely paralyzed him. He once said that,

"I wouldn't be here today if it were not for the NHS [National Health Service]...I have received a large amount of high-quality treatment without which I would not have survived."

Consider: if Stephen Hawking's embryo (or any embryo of a child with a genetic defect) had been screened before his birth, do you think his parents would have felt more pressure not to have him if they were not assured (via the NHS) that their child would receive care?

Or consider the case of the Girl Without A Face (no, I'm not providing you with a link. Google it yourself if you want to, but be warned: you may find your belief in a benevolent deity shaken, and find it difficult to sleep tonight). Juliana's parents are fortunate in that her father works for the U.S. Federal Government, and thus has excellent health insurance to at least partially cover Juliana's incredibly expensive surgeries, but what if he didn't have such coverage? Would it be okay, or just The Way Things Are, for her to die because of it? Or for the family to be bankrupted into oblivion?

I don't have any answers to these questions, but the increasing use of prenatal screening will only exacerbate the question of society's obligation, or lack thereof, to provide medical care for some, none, or all. We can't stick our heads in the sand by trying to outlaw screening; even if we could, it would be cruel to deny this technology to those at risk of having children with certain terrible genetic diseases. Furthermore, as with sex selection and the other reproductive technologies discussed in the course, regulating screening will only be useful if it is done internationally...otherwise, those with the means can simply travel to have it done elsewhere.

If we refuse to regulate screening at all, we may end up with "designer babies", increasing divergence in society, and a loss of genetic diversity. And if we only allow screening to be used in some ways or by some people, we must decide where to draw the line and somehow justify our decision to withhold information from parents. And as more and more information becomes available to parents, it will become harder to say we have no obligation to help the families of children who drew bad straws in the genetic lottery.

Despite all of these tough questions, remember that screening is only a tool. And like any tool, if used wisely, it can help us a great deal. Screening offers hope to at-risk families (and society as a whole) that their children can be free of hereditary health conditions that have plagued humanity since time immemorial. If given the choice between a healthy child and a child in constant pain who will die young, I think all but the most absolutist of parents would seriously take a look at screening.

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 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.