The New York Times, taking a more mixed approach, addresses an issue that was emotionally approached by a mother in a Washington Post editorial that led to a lot of hits to this blog. The issue: "The Problem With an Almost-Perfect Genetic World." A taste of the article:
Some bioethicists envision a dystopia where parents who choose to forgo genetic testing are shunned, or their children are denied insurance. Parents and people with disabilities fear they may simply be more lonely. And less money may be devoted to cures and education.
"Where do you draw the line?" said Mark A. Rothstein, director of the Bioethics Institute at the University of Louisville School of Medicine. "On the one hand we have to view this as a positive in terms of preventing disability and illness. But at what point are we engaging in eugenics and not accepting the normal diversity within a population?"
The first paragraph again leaves me cold. Consider this. We have pre-conception testing now; in fact, for years, many states required (and some still do -- though I assume they open themselves up to court battles in most cases) a blood test before marriage. Why? Well, in part, to siphon off those with certain conditions that were deemed problematic in part because it could affect offspring. Since race generally cannot be determined by blood (except to the degree certain groups are more likely to have certain conditions like sickle cell anemia), these tests are not just some sort of anti-miscegenation measure. They are to put it bluntly partly a sort of eugenics measures. I am unaware, however, of them being deemed by anti-abortion groups and so forth as simply horrible measures though various disability rights groups have targeted them in recent years.
Anyway, suffice to say that pre-conception testing is only more inclusive and far reaching these days. Many, especially those who know certain conditions run in their families, are quite supportive of the practice. And, putting aside the abortion angle, this surely leads to less children with certain conditions. Those who do not test might one day be shunned, etc. But, are we to not allow them too? And, the open-ended nature of the title aside, the article does focus (wrongly) on the abortion angle, speaking at one point of some who fear it has become a "poor man's [is this not one time where the generic "man" is especially inappropriate?] gene therapy." I would add, all things being equal, the part about certain children feeling lonely is -- and their emotional well-being is not to be ridiculed surely -- a bit much. It is somewhat akin to not making possible pre-natal adjustments because the remainder who could not be helped would feel left out.
But, the questions suggested by the second paragraph are ones we must face. The article has a picture of a Downs Syndrome child. Such children cannot be batched together as if they are all alike, but it might be suffice to say many grow up to be perfectly fine adults vis-a-vis the rest of the population. This might sound snide, but truly ... if we compare their "condition" with those of "normal" people, quite often the latter group is left more lacking. And, just what does "disability" mean anyway? What of a individual with some learning disability, but without the more physical characteristics that lead Down Syndrome individuals to stand out more?
The former might in the end be as or less successful in adulthood. What about those who are physically weak in some fashion or perhaps socially awkward? Weed out the "imperfect," who do we have left? Furthermore, do we have a better pool of citizens? I find it distasteful when it seems like some people appear to support the presence of the unfortunates (for purposes of neutrality, choose some group other than the "disabled") because they somehow make us better people or something. But, especially if we draw the net widely, the "imperfects" in society quite often add something with their imperfections. Some blessings are joined with burdens -- many athletes, for instance, have various problems. They are not people who we overall might like to be around or particularly want our children to use as role models per se. But, they have certain gifts all the same. Our society would be less gifted without them to entertain and sometimes awe us.
Still, though the fears addressed by the article have some bite, we are left to our own devices. Are we not to let potential parents decide when and how to conceive? Such people make many decisions, as they have always done, that affect who would be born. For instance, mutts are often the strongest animals. Pure breds tend to be weak, especially when appearance is prized over other qualities. But, we continue to join together with our likes, and this is even more prevalent in some places outside the United States, a nation where mutts are more likely to be deemed the best option. And, it is our right to do so, even if motivated by less than ideal reasons.
The future will raise many problems. For instance, longer lives already have led to many questions, including related to health care and even life time appointments to the federal judiciary (past judges served into their eighties too ... think of Taney and Holmes ... but fewer made it that far). Imagine if we lived healthily deep into our hundreds ... if a person served as President when they were 55, should they not be able to serve again, even fifty years later? Medical and ethical problems arise as well, of course, but this does not mean better health care is the problem. The problem of when to "pull the plug" when current science can cause people to linger for years (often without apparent consciousness) suggests concerns comparable to the article.
We have to face up to them, act accordingly, and not resist recognizing uncomfortable questions. And, some of the negative possibilities will be faced with new solutions (e.g., Down Syndrome is much easier to deal with than it once was -- further discoveries will make it easier). Our society brings with it a certain mindset and set of mores that we have discovered fit our needs more than they do not. No system is perfect though so problems do arise. The article therefore is sound in touching upon them, including our distaste in facing up. Most telling perhaps is the statement that "advocates for people with disabilities are troubled by how much faster the science of prenatal testing is advancing than the public discussion of how it ought to be used."
Sure enough. Let the discussion go on, but let's not kid ourselves and think the problems it raises are somehow new or likely to be solved to everyone's liking any time soon.