- BIOETHICS FORUM ESSAY
Are Parents Driven to Design Their Babies?
The prospect of endowing children with particular genetic advantages has filled people’s imaginations since long before there was in vitro fertilization (IVF) or a field called bioethics. Now, the authors of a survey published in the Journal of Genetic Counseling conclude that “it seems unlikely that the ‘Age of Designer Babies’ is near at hand.”
Here’s a quick sketch of the study: a thousand parents completed a questionnaire that asked them which conditions they would test for if they were having, or planning to have, a child. Considering that these were parents presenting at a genetic testing center, it’s not terribly surprising that many parents said they would want to test for traits like mental retardation (75 percent), blindness (56 percent), deafness (54 percent) and heart disease (52.4 percent). What is a bit more interesting is that so few parents reported a desire to test for traits that the researchers classified as nonmedical enhancements: things like longevity (9.2 percent), tall stature (10.4 percent), and superior intelligence (12.6 percent). Presumably, the “enhancement” would come in using preimplantation genetic diagnosis to determine which an embryo to implant in IVF or which gamete donor to select.
It’s difficult to overstate the point that reliable tests do not currently exist for most of these crude phenotypic categories–and those that do exist are not completely predictive. What’s more, the once seemingly inevitable genetic test for intelligence now seems a reach. But the survey was not probing technical feasibility; it was gauging “consumer demand.” And if we take seriously some of the loudest voices in the enhancement debates, we could get the impression that – for better or worse – the demand is driving parents to break down the doors of clinics to get every test possible for their embryo, fetus, or child. Even previous surveys have suggested that as many as a quarter of Americans would support nonmedical genetic testing.
Perhaps falling into this same trap, my first reaction was to question the study and not my own intuition that surely more prospective parents would opt for testing. Luckily for me, such public opinion studies do call for a healthy dose of skepticism.
For example, the sample seems biased: one can argue that the potential parents who seek the help of a genetic counselor are not representative of all potential parents. In fact, it’s a limitation the study’s authors readily concede. But then again, the parents who would most favor enhancement would also likely be the most fervent supporters of screening against genetic diseases and the parents most opposed to genetic screening are not only less likely to present at the clinic, but would also seem less inclined to support controversial enhancement applications. If anything, this bias would seem to inflate the number of parents who report interest in the enhancement traits.
Other reservations might be tougher to resolve.
How would opinion shift if these tests were developed and readily available? When offered the test in a real clinical setting, would the participants respond as they did when just circling the word on a page?
What about that constant and sometimes not-so-subtle source of pressure we call society? Because these tests don’t exist, the survey respondents didn’t have the opportunity to hear about the family friends who tested their child for “longevity genes,” or read a first person account in The New York Times Magazine, or receive the soft-sell from a glossy brochure. A major concern of those opposed to such enhancement is that slopes are slippery and use will inevitably expand.
Most curiously, these data don’t give us a good sense of how much these potential parents are in favor of or opposed to enhancement technologies. We gain very little insight about whether the parents’ views about these traits map on to the treatment-enhancement distinction invoked by the investigators. Some of the parents might test for mental retardation and view it as an “acceptable enhancement,” while others could see the same procedure as an “undesirable medical treatment.” Indeed, even in the case of mental retardation, a full quarter of the parents said they would decline testing.
Many of these limitations come with prospective surveys, which does not mean that they are not worth doing. Although the results are open to challenge, they do suggest that parents might be likelier to draw the line sooner than we thought – many are willing to test for illnesses, but may be unwilling to go further, or uninterested in doing so. Even if my lingering hunch that more parents would opt for testing is flatly wrong, there’s still reason to pause. After all, when we’re talking about real people and real tests, the distinction between medical treatment and enhancement can be exceedingly difficult for us to draw and certainly is not fixed.
At a minimum, these complexities do call into serious question the authors’ declaration that their study has uncovered the “true nature of consumers’ desires.”