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.