Creating Humans: Ethical Questions, part 11 -Population Control

~Somewhat belatedly continuing my bioethics lecture analyses, today’s topic is population control.  The other reproductive technologies I’ve previously discussed are largely available only in developed nations (i.e. screening), although some are becoming increasingly available in developing nations (i.e. gender selection).  But population control is different, and has been a bioethical issue among human societies for…well, as long as there have been human societies.

Most developed nations are experiencing declines in growth, and some are in fact experiencing a decrease in population.  The reasons for this have to do with smaller family sizes, emigration, and economic changes.  Although zero or negative population growth results in an aging population and subsequent economic headaches, this is not the focus of my analysis today although I did discuss it earlier with regards to Japan.  [Although, the question of whether or not growth, in both the population and the economy, is always a good thing is in fact a very good question.]

These days, population control issues are largely confined to developing nations, as a result of improvements in hygiene and medicine that have not (yet) been matched with a decrease in birthrates.  In these nations, population control is a question of scarce resources.  Burgeoning populations, particularly China and India, are already placing tremendous stress on available resources and services, as well as catastrophic environmental degradation and pollution resulting in health issues and long-term socioeconomic problems.

The key bioethical question when discussing population control is: How can we reconcile human rights with any coercive policy of population control, especially in developing nations?  Some question the need for any controls, pointing out that the Malthusian disaster of global famine has been averted again and again as a result of technological improvements leading to increased food production.  But although food is a key limiter of population, it is not the only resource humans consume; water shortages, for example, are predicted to be a major problem in the next few decades.  Access to medicine and medical care, especially in a time where global travel can allow pandemics to quickly spread, is another limited resource.  Jobs and limited economic opportunity may also prove scarce, which can lead to mass unrest.  These challenges and others have convinced some people and nations that population control is necessary.

I don’t think most people (except perhaps the “be fruitful and multiply” fundamentalist crowd) have any problem with long-term efforts to reduce birthrates. For example, the most reliable method of decreasing the birth rate of a nation in the long term is the education and empowerment (via economic opportunities and availability of birth control) of women.  This will almost always decrease birth rates…but it takes time, and with the population of some nations rising so rapidly, it may not be fast enough to prevent the problems mentioned above.

The bioethical problems begin when such national (and possibly global) methods of population control become coercive.  As with so many of the reproductive technologies I’ve discussed, international conventions on population control are either unclear or nonexistent.  From what I can tell, this seems to be because international discussions on population control inevitably devolve into arguments over contraceptives (opposed by conservative Muslim and Catholic nations and the Catholic Church) and abortion laws.  Unfortunately, these disagreements have so far prevented a truly global dialog on population control in the context of individual nations or the planet as a whole.

The quintessential example of coercive population control is the “One Child" policy enacted by the People’s Republic of China in 1979.  With extensive propaganda and the motto “later, longer, fewer”, it aimed to stymie that nation’s rapidly rising population, particularly in urban areas, by levying fines on families that had more than one child (for a full history of the policy, see here).  The policy seems to have been successful (although not as successful as predicted) in reducing long-term population growth and is slowly being dismantled, but it has resulted in two problems:

• Human rights violations ranging from infanticide, forced sterilizations and abortions, and underreporting of births resulting in “undocumented” people.

• Potential unrest caused by an aging population, gender imbalances (since the policy favors boys), and ethnic & socioeconomic discrimination in the way the policy is enacted.

In a political sense, such unrest might be perceived by Westerners as a good thing, (since it may result in an increased democratization of China), but it does show that this sort of coercive population control is not without its flaws.  Such a policy can only be achieved by an authoritarian government such as that of China; conspiracy theories aside, such a policy is very unlikely to be enacted in a democracy without major political upheaval (i.e. no more democracy).

But such changes are not entirely beyond the bounds of possibility, especially in a poisonous political environment where a segment of society is targeted as causing problems or taking up too much resources.  To the Nazis, it was Jews, Gypsies, gays, etc.; in the American south, it was blacks; in America today, hatred is directed at undocumented immigrants and their fictitious “anchor babies”; tomorrow, when robots do most of the work, it might be the unemployed masses. 

I’m reminded of one of my favorite science-fiction stories from when I was younger: Invitation to the Game by Monica Hughes.  Most of the main characters are the children of unemployed people, and because there are no jobs for them, they too become “unemployeds”, confined to an urban ghetto.  Early in the novel, the protagonist reads a newspaper article in which a senator calls for the sterilization of the unemployed.

But I don’t think things will go that far, at least not for a while.  Although I believe that educating women and increasing access to birth control are better solutions to long-term population pressures, I recognize that my perspective is shaped (some might say warped) by the fact that I live in a wealthy developed nation.  In the meantime, we must ask ourselves how to reconcile human rights with the issue of population control.  Consider the following questions:

• Imagine you live in a developing nation with a rapidly rising population and extreme inequality.  Would you support/obey a one-child policy, if it meant that your family could only have one child?

• Assume that a chemical is developed that, when added to drinking water, decreases fertility rates by, say, 50% with no other harmful side effects.  Would it be ethical for the state to (publicly) add this chemical to drinking water, just like we do now with fluoride?  What about in developing nations?

• Imagine you are a delegate to an international meeting intended to craft a convention on what is and isn’t ethically acceptable as a means of population control.  What methods, if any, would you support?  Which would you oppose?  Imagine you’re the delegate from Russia (growth: –0.19%/yr).  Now imagine you’re from Liberia (+4.5%/yr).  How might your decisions be different?

• Is coercive population control ever ethically acceptable?  On a national level?  On a global level?  Why or why not?

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, Part 2

~Lecture 2 of Creating Humans dealt with a question central to reproductive ethics: When does life begin?  For many people, this is an easy, blatantly obvious answer, and they cannot understand why other people might want to answer this question differently.  We've all heard these answers, mostly in the context of abortion.  The pro-life crowd howls, "Life begins at conception!".  The pro-choice crowd snaps that "Life begins at birth!"  There is no middle ground in the arena of moral absolutes.

[Source: Englehart, Bob. "When Does Life Begin?" The Hartford Courant: 1981.]

That being said, the lecture makes the point that although people don't morally agree on a definition of when life begins, the actual law in place in the U.S. and U.K. is in fact an elaborate series of compromises between the two extremes.  This results in the law being rigid in some areas of assistive technology, and slack in others.  This is especially apparent with newer technologies that either do not loom large in the public imagination, or are morally ambiguous.  For example, some U.S. state laws are as restrictive as possible in limiting abortion, but allow IVF and prenatal screening almost without regulation.  It's easy for politicians to score points with voters by taking a very public position on a hot-button issue, while ignoring a morally-equivalent issue that doesn't get the same amount of press (this comes up again in the lecture on cloning).

Much of lecture 2 was devoted towards attempting to establish a scientific, objective definition for when a person is really a "person" and thus entitled to legal protection.  Although I found the science in this area to be interesting, I also thought it was mostly a waste of time to apply such science to the law.  Regardless of what the facts are, I don't think any definition will find universal acceptance; the emotions simply run too high, and are too tightly bound to the endless, fossilized abortion "debate".  It would be nice if we could agree on a definition to help guide us in the use of other reproductive technologies, but I don't think it's going to happen in a social sense.  Even (or rather, especially) any attempt at a legal definition would be subject to endless attack.

• My view: an embryo is a "person" once it's actually embedded in a person and growing on its merry way.  I don't think that an embryo fertilized in a lab and sitting in all of its single-celled glory is a "person", and I don't think that fertilizing (and discarding) embryos for IVF or screening is somehow a monstrous crime against humanity or first-degree murder of a child, etc.  But there is one major caveat to my definition: I have no desire whatsoever to legally impose it on anyone by force.  This is one of many reasons why I would make a terrible judge or politician; I'm no good at condemnation.  Does this mean that I am a wicked/weak, immoral person?

• Despite what I've said above about moral absolutism, I've found that the truth is actually much more fungible (great word, fungible).  Some people -- I would go so far as to say many people -- will quickly abandon deeply-held beliefs if doing so somehow benefits them personally.  They are just as quick to revert to their previous position later on.  It's part of how our brains work; humans, like other organisms, are evolved to adapt to changing circumstances.  For example, consider the essay "The Only Moral Abortion is My Abortion", a collection of exceptionalist anecdotes (displaying a very American mentality).  Another theoretical example would be a parent who also believes that life begins at conception, but upon discovering they and/or their partner are having fertility problems, will search out reproductive technology such as IVF...while still clinging to their absolutism.  We might shake our heads and call these people hypocrites, but I think it's important not to judge them.  Remember, don't judge someone until you've walked a mile in their shoes (that way, you're a mile away, and you have their shoes).

• Please consider this question: when do you think a fertilized embryo becomes a "person"?  Are you a moral absolutist, with no room for compromise?  If your definition is based solely on your beliefs regarding abortion, please try for a moment to look beyond that ossified debate and think about how your definition might affect your views on other forms of reproductive technology, such as in-vitro fertilization, screening for diseases, genetic enhancement, cloning, and so forth.  Consider what you would do if you or someone you love needed or wanted to use one of these technologies.

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?