FOR BETTER, WORSE, OR NOT AT ALL
John Weston Parry, J.D.
Recent articles in The New York Times, Washington Post, and Popular Science Magazine, respectively, illustrate the difficulties of relying on science to determine how the law should govern persons with mental or developmental disabilities or limitations. The most serious problems seem to arise when popular beliefs, rather than sound philosophical principles and analysis, guide science and the law. Yet, even well-practice philosophy may not provide satisfying answers to all the legal questions that these four articles explore or touch upon having to do with genetics, developmental immaturity, and fetal pain:
- Should gene editing be adapted to prevent the birth of infants with mental and physical impairments?
- If a gene contributes to making people more likely to kill others and/or themselves how should we use that knowledge?
- If we know that minors, due to their developmental immaturity, are less culpable than adults, but we do not know at what age each individual is likely to be fully mature, how should courts in criminal matters utilize that knowledge?
- If we know that at some juncture during the developmental process fetuses begin to feel pain but not when, should governments compel mothers who are having later-term abortions to be administered anesthesia or painkillers?
Gene Editing and Other Manipulations
In a Washington Post article about Jennifer Doudna, one of the leading molecular biologists who helped develop a complex gene-editing capacity—commonly known as CRISPR (clustered regularly interspersed short palindromic repeats)—the issue of using that technology to edit the human genome in order to prevent the birth of infants with mental, developmental, and/or physical impairments was a topic. Joel Achenbach’s piece focused on Down Syndrome after a mother, who has a child with that condition, reportedly told Doudna: “`I love my child and wouldn’t change him. There’s something about him that’s so special….” In the past, there were similar arguments made about gene identification to allow mothers to abort fetuses with presumed debilitating “defects.”
A primary reason that the CRISPR technology, based on the natural defense system to fight bacteria, appears to be so promising has to do with the informed opinion that “it’s by far the cheapest, easiest, most versatile [method for manipulating genes….]” It already has been used successfully on “monkey embryos.” Thus, human gene manipulations may not be that far away. Gene identification in humans already has been available for a long time and used in a variety of ways, including genetic counseling for prospective parents, who might be carrying genes that cause devastating impairments.
Unfortunately, in this context, Down Syndrome as an illustrative example is not a particularly apt one because that condition is atypical of the type of debilitating impairments that genetic deficiencies can cause. Many—and probably most—people with Down Syndrome can and do lead productive and fulfilling lives, and many more would do so if they were given the opportunity.
That example raises some of the same concerns, posed from a very different perspective, by the deaf community. Should children, who are severely hearing impaired be allowed to receive cochlear implants or other technological assistance? Within much of the deaf community, the status of not being able to hear is what makes that community special. Deafness also provides diversity to a society that is overly dependent on hearing to function.
Ultimately, though, all of these concerns should be outweighed by freedom of choice for the individual who is most affected by that choice. Personal beliefs by themselves should be respected, but should carry little or no weight in reaching a sound legal resolution as to whether a technology with proven benefits—or potential benefits—should be developed, and how it should be used and regulated for someone else.
Mothers with kids who have Down Syndrome make a heartfelt argument when they opine that their child is “special,” as do deaf people who feel their sign language-based culture is “special.” Nevertheless, the validity of those opinions to the people that hold them are not winning arguments for preventing the development of technologies to improve the lives of other people, if it can be done without creating an unreasonable risk to human kind or the planet. Moreover, regardless what people may feel about a technology that has the potential to change lives in a positive manner, it is extremely difficult, if not impossible, to put the proverbial genie back in the bottle, especially if that technology is likely to generate substantial revenues.
The main reason that the “with disability” language has gained so much traction in the disability community, and has spread by analogy to other devalued groups and cultures as well, is that there continues to be a sound moral imperative behind the use of such language. People should not be limited unnecessarily because of one characteristic that they may possess, including having a mental, developmental, sensory, or physical disability.
Conversely, people are not “special” because they have Down Syndrome or are deaf or severely hearing-impaired. Labeling them special because of their disability and then taking actions to protect that “specialness” can be negatively paternalistic. Competent adults should make any decisions as to what should be done on their behalf. Before conception or in the fetal stages, however, the decision-making calculus becomes more complex. Nevertheless, that decision-making, barring a compelling social interest, resides with the mother or parents to be.
There is a clear distinction between gene counseling of pregnant women and gene editing prior to conception. Before a woman becomes pregnant, the divisive abortion issue is not present. The question becomes whether to pursue gene identification and editing to prevent specified conditions from occurring as a public health matter, or allowing prospective parents to decide whether they may have their genes edited to prevent various severe impairments from occurring.
The notion of compelling parents to undergo genetic counseling and genetic manipulations to ensure that their children do not have disabling conditions has an Orwellian feel to it that in all likelihood Americans would overwhelmingly reject. Furthermore, deciding where to draw the line among impairments would be an extremely difficult task, even assuming that such gene manipulations carry little or no health risks.
On the other hand, outlawing the use of gene identification and editing technologies altogether would seem to be an overreaction. In addition, such a policy would likely create a black market industry, significantly increasing the risks. Freedom of choice has always been the philosophical center of American society. Thus, if parents want to use gene technology to ensure that their children to be do not have specified disabling mental or physical conditions or impairments, they should have that right within reason.
Unfortunately, the slippery slope, eugenics argument suggests that unfettered choice without regulation would be too painful and dangerous for our society to endure. For example, parents might decide to choose the sex of their child, its skin color, or what types of special abilities the child might have. As with compulsory sterilization, there should be strict legal limits placed on how we fool around with nature, diversity, and natural selection. The burden of proof necessary to intervene should be on those proposing to interfere with what we know from science to be natural.
Genes, Homicide, and Suicide
Another aspect of gene editing is a notion that it could be applied to eliminate “killer genes” that are perceived as being responsible for people who are homicidal or suicidal. Popular Science Magazine has embraced the idea that there may be genes that cause “violence and psychopathic behaviors.” A particular article in that magazine focused on a gene that codes the “enzyme monoamine oxidase A (MAOA), which “break[s] down crucial neurotransmitters, such as dopamine and serotonin.”
More than ten years ago, the media began dubbing “one of the genes that cause the [MAOA] deficiency as ‘`the warrior gene.’” Lending credence to the possibility of using gene editing to fight behavioral aberrations—at least in the opinion of Lois Parsley the author of this article—was a recent discovery by “Harvard scientists … [of] a gene that might lie at the root of schizophrenia….” Schizophrenia is a mental disorder that has been associated with violence. Based on these suppositions, Parsley posed the emotion-laden question whether there was “a genetic link between [serial killer] Ted Bundy and [the Sandy Hook shooter] Adam Lanza?”
There are at least two fundamental deficiencies with this line of thinking. First, the available gene technology is not to prevent the birth of people with “the warrior gene” or other genes tentatively linked to violent or suicidal behaviors. Companies are developing these technologies to identify people with those genes, so governments may place those individuals under close supervision and/or detention. Governments already employ such methods against persons with sexual or mental disorders, after they have completed their prison sentences.
The profit-making rationale for developing these highly intrusive technologies is to justify draconian deprivations of liberty and freedoms using so-called scientific advances as the fulcrum. The potential use of gene editing in this context is much further in the future, and potentially far riskier. It is risky to edit out a gene that causes a disease or disabling condition, which might also negatively affect other biological functions. It is much riskier still to edit out a gene, which produces an enzyme that we know has multiple biological functions.
Second, none of the known genetic methods to identify violent offenders or suicidal individuals has been accurate and reliable or valid in the circumstances and environments that they have been used. All of these methods are woefully deficient in accurately predicting human behaviors. As a result, Parsley tries to justify what she calls “genetic determinism” with the misleading argument that “people with serious mental illnesses are two to three times more likely to become violent than those who are not.”
To begin with, that statement is mostly false, since it actually only applies to a very few mental disorders, not all of them. In addition, being statistically more likely is a status with very little practical meaning if, as with homicides and suicides specifically—and even violent crimes more generally—those behaviors occur rarely. This fallacy is the base rate deficiency in trying to predict statistically rare events. Being three times as likely to occur when the probability of an event like a homicide happening may be only one in a hundred or more has very little statistical significance. In other words, knowing that someone has a 3% chance of committing a homicide compared to a 1% chance should have no policy implications, beyond doing nothing.
There is almost no predictive value in knowing that. Even if a violent event might happen 10% of the time—which probably would not be the case, even for all violent crimes and suicides bundled together—being “two or three times more likely” might still only increase the likelihood from 10% to somewhere between 20% and 30%. This would mean that statistically the primary justification for this type of gene editing would still fail between 70% and 80% of the time.
Developmental Immaturity in Juveniles and Adults
Four highly respected social scientists—psychologists, Lawrence Steinberg and Thomas Grisso, and law professors, Elizabeth S. Scott, and Richard J. Bonnie—wrote an op-ed piece in The New York Times opposing a proposed juvenile justice reform. They urged lawmakers not to “treat young adults as teenagers… [by increasing] the age of juvenile court jurisdiction to 21 from 18, where it now stands in almost all states.” These four social scientists, however, embraced the existing policy of treating juveniles under 18 differently than adults, based on “psychological and brain science indicating that people under 18 are not yet fully capable of controlling their behavior….”
They opined that while raising the age for juvenile courts until a person turns 21 was “well-intentioned, [it] is premature at best…. [R]esearch on the maturity of young adults (i.e., those between 18 and 21) is at an early stage… [I]t is not clear that the brains of 20-year-olds are so immature that they should be treated as if they are teenagers.”
This argument seems reasonable in part because, despite what we know about developmental immaturity, many juveniles under 18 receive worse treatment than adults. If the jurisdictional age were to increase, there is an understandable concern that governments probably will choose to dilute the already inadequate resources available to provide special assistance to juvenile offenders, rather than increasing them based on the demonstrated need. Juvenile justice in the United States remains a disgrace and a blemish on our character as a nation. This has been true both with regard to defendants tried and detained in the juvenile justice system, and other juveniles tried and imprisoned as if they were adults.
In addition, there are a large proportion of defendants under the age of 21 with various mental, emotional, and/or developmental impairments, who clearly lack the maturity of a young adult, and thus deserve special treatment in the criminal justice system. These special needs kids or young adults probably make up a majority of defendants under the age of 21. Thus, conceptualizing the preferred jurisdiction of our juvenile courts as one between juveniles of a certain age, who are developmentally immature, and older juveniles who are clearly less so, may be well-intentioned, but it is inadequate and arbitrary when the total population of juveniles at risk is considered.
The overriding problem is that developmentally immature defendants of all ages and kinds continue to be treated like mature adults or worse, not only at sentencing, but while they are incarcerated. Whether dealing with these developmental and cognitive differences is the role of a criminal court intended for juveniles or adults is far less important than carrying out that role properly. Instead of arguing about the jurisdictional limits of a juvenile justice system that is broken, it would be more productive to fix the criminal justice system as it applies to all developmentally immature and cognitively impaired individuals.
Whether, chronologically, they are juveniles or adults, developmentally immature defendants should have their diminished culpability considered at sentencing and their special needs provided for, should they be imprisoned. Fighting about a jurisdictional age of 21 diverts time and resources from the more important issue of adequately providing for all of these developmentally immature defendants.
Anesthesia On Behalf of Fetuses Who Feel Pain
Abortion and other reproductive issues involve a clash of competing rights. It is not that one right is legitimate, while another is illegitimate. Rather, one right outweighs the other. As the U.S. Supreme Court has ruled repeatedly, there must be a balancing process to arrive at a just outcome. Thus, it is not a matter of good versus evil, which is how it tends to play out in the unnecessarily contentious court of public opinion. On one side is the right of a mother to control what happens inside her body. On the other side is the opportunity for a fetus to maximize its potential to live.
The abortion controversy often focuses on ascertaining the value of a fetus when compared to a newly born infant, with respect to viability. A newly born person is 100% viable, whereas the fetus has degrees of viability, depending on its stage of development and other health factors. The right of the mother to control her body is compelling and constant, but not absolute. The balancing of competing fetal rights, however, changes as her fetus assumes increasing characteristics of personhood as it develops in the mother’s womb. At the extremes of the abortion issue are those who fervently, but incorrectly, believe that a woman’s right to control her body or the fetus’ right to life are absolute, or, conversely, the opposing right is nonexistent. From these extreme perspectives, there can be no balancing of interests.
As reported in The New York Times, a new Utah law—the first of its kind nationwide—creates a new balancing act for the courts. The law mandates women in that state, who are having an “abortion 20 weeks or more into a pregnancy… be given anesthesia or painkillers” to protect their fetuses from experiencing pain. If doctors do not obey this law, they may lose their licenses to practice medicine or face substantial fines. In addition, doctors must tell their pregnant patients that at 20-weeks the fetus may experience pain during an abortion. What makes this even more disturbing is that there is no hard evidence as to when a fetus is mature enough, developmentally, to “feel pain.”
Instead, the courts must rely on the informed opinions or educated guesses of “most scientists who have expressed views on the issue … [that] they do not think neurological wiring to feel pain is in place until a fetus is further along in a pregnancy, past the point when nearly all abortions occur.” Moreover, there is little or no scientific evidence supporting the view that a fetus would feel pain at 20 weeks. While the Times article points out that this law would apply only to a “small percentage of abortions,” which occur late-term, other states considering such legislation could decide to apply the law to earlier-term abortions. Also it should be noted that “[m]any women already receive anesthesia or painkillers if they have surgical abortions, and those drugs naturally pass to the fetus.”
The judicial balancing of constitutional rights is different in these circumstances from abortions per se, although it appears that the Utah enacted the legislation to place a new obstacle in the way of women seeking abortions. For women who normally would elect to have anesthesia or pain killers during such a procedure the constitutional imposition would be relatively minor, at least as compared to women who would rather not be medicated for whom the imposition would be much greater. What type of pain relief would be sufficient to comply with the law is impossible for a doctor to know, since it is unclear whether the fetus would experience pain and, if so to what extent. Thus, the Utah Health Department indicated that attending doctors would be able to decide how much anesthesia and/or pain relief is necessary, at least for now. Regardless, compelling women to undergo anesthesia or to take a pain-relieving medication is a clear invasion of their right to control what happens inside their bodies.
On the other side of this judicial balancing of competing interests is the uncertain possibility that at 20 weeks a fetus does experience some unknown level of pain. That possibility, however, has little or no scientific support. Rather, the argument is the possibility that what most scientists appear to think to be true may be in error. Thus, what the presiding judge must do is balance a known right of women to control their bodies, which is compelling, against the unproven possibility that the fetus may experience pain.
Legally, the burden should be on those who want to invade the right of women to control their bodies, to show that a more compelling right is at stake. Currently, the necessary scientific evidence is lacking. Even if it were demonstrated that there was a strong likelihood that a fetus at 20 weeks old experiences pain, however, whether that would be enough to alter the judicial outcome remains uncertain, since there are no precedents on point.
Moreover, that aspect of the legislation, which forces doctors to violate their Hippocratic Oath to their pregnant patients, makes the law all the more pernicious. Not only will these pregnant patients experience psychological pain and distress, but they may be harmed physically, if the doctor miscalculates and gives them too much anesthesia or medication in circumstances in which no one really knows what the correct amounts should be.