Who has full rights to the genetic makeup of unborn children? Is it the parents, or is that privilege better left in the hands of the divine? Is “tinkering” with an unborn child’s DNA morally corrupt even when the parents have the best interest of the child in mind? Is too much knowledge indeed a bad thing, or does the removal of ignorance grant the newly enlightened a sense of unparalleled autonomy? The issue of designer babies is a complicated one.
I personally believe that actively engineering your potential children’s genes simply for the sake of personal choice is morally detestable and ethically flawed. Yet if parents know that some type of horrendous disease will afflict their child and make the youngster’s life miserable, and the parents want to save their future children from such misfortune, then I think the moral and ethical pendulum swings the other way. In essence, the same external manipulation exists, but the intent of said actions has a completely different disposition, a very important distinction to be made.
Take, for example, the case of Amanda Kalinsky, a 20-something-year-old woman who carries the gene for Gerstmann-Sträussler-Scheinker disease (GSS), a rare and lethal neurological sickness that has no cure or treatment. GSS tends to run in families and on average begins to exhibit symptoms analogous to early-onset dementia (trouble speaking, unsteadiness on the feet, and forgetfulness) starting anytime in the patient’s 20s until the 60s. The progressive disease can cause problems for months to years before claiming the lives of its victims. Since Mrs. Kalinksy is a carrier of GSS, she poses a risk to pass the gene along to her children. Alongside her husband, Mrs. Kalinsky chose to have in vitro fertilization for her pregnancies. In each case, her eggs were tested for the disease-causing gene, and only those eggs without the gene were then implanted. The Kalinskys are now parents of three children, each of whom are GSS-free.
In this case, the parents were focused on one specific gene, but whole-genome sequencing and next-generation sequencing procedures will allow DNA testers to decipher a bunch of genetic material (i.e., an entire screening of the unborn child’s DNA) in order to determine genetic predispositions for even trivial characteristics (like hair color) to the risks of threatening diseases like cancer or heart disease. The technology does not exist yet that will allow parents to insert or change genes to match their desires, but current expertise does allow them to dismiss certain embryos based on a genetic profile.
Many ethical dilemmas subsequently exist, but notably parents are now faced with two cardinal problems: (1) the concept of an open future, a term used by bioethicists to denote a scenario where both parents and children remain ignorant of their genetic predispositions, is now rendered null, and thus behavioral patterns will undoubtedly change from birth; and (2) dismissing embryos with certain undesirable genes is analogous to playing God and concluding that these embryos do not in fact have a right to live.
The first issue is easier to navigate because in many regards, even without genetic testing, most people tend to not have open futures unless they suffer from a rare mutation or are the first person in their family to develop a certain disease. If John Doe, for instance, has 10 first-degree relatives with adult-onset diabetes, and Mr. Doe’s father, grandfather, and great-grandfather all had diabetes, there’s a pretty good chance John will develop diabetes. This may not have been confirmed by gene sequencing, but common sense and simple probabilities suggest a high likelihood. In this sense, John’s future is not “open,” but whether or not he chooses to embrace or ignore the facts will ultimately be a choice he will have to make as an informed adult. He may adopt a healthy lifestyle at a very young age preventatively, or he may choose to binge daily on high-sugar foods and obtain no form of exercise. Individual autonomy is paramount, and that same autonomy may cripple some people with fear, doubt, hesitation, anxiety, and worry; but it may also simultaneously empower, strengthen, equip, and enable the well-informed. I don’t think it’s the physician’s job to ever withhold valuable information, and it is our responsibility to inform patients and parents of concerning results; what is done with those results should always remain the prerogative of the owners of the genes—the patient and, indirectly, the parents. Let us all not forget that open futures are not fully closed by genes that code for predispositions but not certainty—many common diseases are caused by a multitude of factors (e.g., heart disease), and thus we are not in total bondage to a particular gene sequence.
The second issue is highly complicated for obvious reasons. The act will always be the same, but the intent (save the child from unnecessary hurt versus I want designer babies) can diverge remarkably. Is there any ethical argument that can be constructed against parents who want to save their children from avoidable pain, suffering, and premature death? Conversely, our society has already established the moral groundwork to make designer babies perfectly ethical and just since women have the right to terminate life (abortion) without reason, in the case of a genetically undetermined baby. Using this secular framework, who is to say then that parents cannot choose life, with reason, with genetically favorable characteristics? Gattaca may be closer than we all think.
In conclusion, I don’t think there is any right answer to the moral dilemma of designer babies, but just as technology can be regarded as an inevitable path toward the perverse, it can also produce novel and groundbreaking means to save lives. Take, for instance, the case of Joshua Osborn, a 14-year-old boy whose life was saved from a rare brain infection using next-generation sequencing procedures. This technology will not only provide more timely diagnoses, but it also has the potential to lead to more effective treatments for conditions that are hard to identify—in short, less guessing, more certainty, saving more lives, and producing healthier patients.
Dr. C. H. E. Sadaphal