This analysis is an attempt to make sense of how to classify and coherently discuss some of the most relevant biotechnologies as well as their implications for different populations -- and for the future at large.
The diagram below represents a map of various means by which people might modify themselves and their offspring, or by which they might "configure" future generations.
My intent in creating it was to provide a visual representation of how I imagine the "bioengineering topic-space" and the kinds of existing, emerging, and potential technologies which are prompting many to re-assess deeply-held concepts of personhood, humanity, and normality.
The main boxes in the diagram are titled Consenting Agents (blue), Non-Consenting Agents (violet), Pre-Potential Persons (red), and Potential Persons (green). Some of these list items are further clarified (via explanations in parentheses below the item). The blue, violet, red, and green boxes all overlap slightly; this is intended to indicate that there is a certain degree of fuzziness in delineating those categories.
Motivation and Rationale
Each list item in each box is assigned additional color-coded symbols indicating the motivations and reasons that tend to underly that item. These color-coded symbols are explained in the legend in the lower right-hand corner of the diagram.
In the context of this analysis, "Lifesaving" (indicated by a red rectangle) means that a given action can be applied in the service of saving a life. Most of the time, the life being saved refers to the life of the person being modified (via surgery, drugs, etc.) -- however, in the particular case of "Potential Persons", the "Lifesaving" symbol refers to the life of either the mother-to-be, or of siblings or other persons whose lives will be saved due to the birth of a matching donor ("savior siblings").
"Enhancing" (indicated by a blue rectangle) in this context refers to an action taken to improve some aspect of a person's functionality, ability set, or other attribute. I take the position that all actions taken that change a person in some way are best described by the more neutral term "modification", however, the term "enhancement" here is being used to express that from the perspective of the person choosing a given modification, that modification is going to act in a positive manner.
"Cosmetic or Socially Motivated" (indicated by a green rectangle) in this context refers to an action taken to address an aesthetic/cosmetic preference or concern, or to satisfy a perceived social obligation or insecurity (which may relate to discrimination, economic factors, etc.). This category includes everything from haircuts to rhinoplasty to possible future actions people might take (e.g., adopting fur or feathers in an attempt to resemble one's favorite nonhuman animal).
"Life-Enabling" (indicated by a yellow rectangle) in this context refers to an action taken which allows a life to happen. Life-Enabling is distinguished from "Lifesaving" in that in order to save a life, you first have to have a life to save; fertility treatments, for instance, make lives possible but they cannot be said to be saving lives.
Concepts and Buzzwords
The pale cyan and pale orange squares in the "center field" of the diagram represent various concepts and buzzwords often associated with different modification/bioengineering types and the populations they apply to.
The pale cyan square lists concepts primarily relevant to existing agents, whether they be consenting or non-consenting. It is placed closest to the "Consenting Agents" and "Non-Consenting Agents" blocks for that reason.
The pale orange square lists concepts primarily relevant to hypothetical beings and/or social frameworks and theories. It is placed closest to the "Pre-Potential Persons" and "Potential Persons" blocks for that reason.
Note that the orange and cyan squares are not intended to group one set of concepts as being "good" and the other set of concepts as being "bad". I may personally think that some of the items are worthwhile or problematic, but that isn't really the point here. Rather, these boxes are intended to show that there are some concepts that tend to be more relevant to hypothetical/potential beings, and other concepts that tend to be more relevant to existing beings.
It is important to make this distinction because of the common confusion in bioethical discussion that occurs when people attempt to equate an action performed on an existing person with an action performed in order to bring (or not bring) a certain kind of person into existence in the first place. I see that particular confusion as the result of what happens when people spend too much time banging abstractions together without remembering to acknowledge the real world now and then.
The notion of consent applies only to cases of existent persons -- that is, persons who either can render legible consent, or who cannot consent but who are nonetheless persons and who might at some point be in the position to comment on what has been done (or not done) to them. Consenting Agents are defined, for the purposes of this discussion, as individuals who choose a particular configuration according to their own functional or survival needs, wants, and/or desires to express their creative impulses through their physiology.
This category includes artificial limb users, feeding tube users, body-modification enthusiasts, fitness enthusiasts, voice-synthesizer users, would-be cyborgs, life-extensionists, and anyone who is in a position to choose between keeping or adding a particular configuration or trait, or discarding a particular configuration or trait.
If an agent is defined as "consenting", it will be assumed that in order for any kind of modification to take place, the individual in question must not be coerced or pressured by outside agents, and that the individual is amply informed as to the possible ramifications of a given modification. It is also assumed that social factors (such as discrimination) count as coercion, meaning that a person who is threatened with something like loss of employment if he or she does not undergo a particular procedure cannot be assumed to be truly consenting. (A literary example of this situation can be seen in Elizabeth Moon's novel, The Speed of Dark, in which autistic workers are "encouraged" to take part in an experimental procedure that would make them nonautistic, due to a perception that the company that employs them could cut costs through eliminating the accomodations provided to the autistics).
Items in the Consenting Agents category are very much tied to the concept of morphological freedom. These items are explained below:
Prosthetic Self Modification is defined here as being something "somatic" that does not affect the germline -- that is, it is something that a person might apply to themselves and that might alter their form radically, but that will not affect their gametes or be transmitted to their offspring. A prosthetic self-modification (as indicated by the color code) might be undertaken for lifesaving, enhancing, or cosmetic reasons.
- A lifesaving prosthetic modification might be the installation of a breathing-assistance device, or a treatment intended to restore mobility to paralyzed chest muscles.
- An enhancing prosthetic modification might be the use of a drug that improves visual memory, or replacement of a biological limb with a mechanical one perceived as being stronger or more agile.
- A cosmetic prosthetic modification might be a rhinoplasty or something as simple as a haircut.
Prosthetic self-modification is an area where the concerns of would-be cyborgs, progressives, and disability advocates ought to overlap visibly. These groups are heavily invested in morphological liberty and are dependent upon consistent defense of the right not to be normal. Additionally, these groups share common sentiments about the intrinsic worth of sentient lives, with longevity advocates arguing in favor of intensive biogerontological research (because being old shouldn't mean your life stops being worth saving), and disability advocates making the point that no, they would not rather be dead than disabled.
Gene Therapy is defined as being a procedure intended to alter the genes of an individual (who is assumed in this case to have consented to this treatment, and who has not been coerced in any way). There is potential for this therapy to affect the individual's offspring via genetic transmission, however, there is no guarantee that it actually will.
Germline-Affecting Self Modification is defined as being a chosen modification that will affect one's offspring; that is, the person receiving it knows that his or her children are going to be different in some particular way as a result. The primary motivation behind this sort of self-modification is to modify the person who chooses it, however, any children born following the modification will exhibit characteristics consistent with that modification.
This is the sort of bioengineering that I believe is most likely to contribute toward an eventual "speciation" of future persons; people will configure themselves as they see fit, and their children will reflect these choices. And since parents generally like having children who resemble them in some way (since this makes them easier to relate to), this will not be considered a negative. Germline-affecting self modification stands out as being an avenue by which the sentients of tomorrow may drastically differ from the sentients of today, but not due to any sort of "eugenics" regimen, coercion, or restriction of reproductive freedom.
But does the person who modifies himself or herself in a way that affects his or her germline have any "obligation" toward his or her theoretical future children? Many would probably imagine so, and certainly, people can attempt to extrapolate from the present into the future and make the best possible choices they can according to the information they have available. But most people are likely do this anyway if they plan to have children at some point; I do not anticipate that many parents would choose a modification that would make their future children more susceptible to cancer, for instance.
Additionally, when considering any modified person, it would not be appropriate for states or other regulatory entities to restrict personal modifications on behalf of purely hypothetical future children. After all, if these restrictions applied to personal modification, should they not also then apply to career choice, hobby pursuits, and sporting activities (since all these can certainly affect the configuration of a future child, as well as the environment in which he or she is to be raised)? Restricting the right of germline-modified humans to reproduce would be very similar from an ethical standpoint to restricting the right of disabled persons to reproduce. Such a restriction smacks of notions of "racial purity" and other unsavory concepts that we certainly do not want following us into the future.
Overall, the category of modifications likely to be employed by, and applied to, consenting agents is the one that is perhaps the least controversial (at least if you exclude the issue of safely and ethically testing all the modifications that might fall into this category; that is another topic entirely). The challenges in achieving an environment in which people can seek and enjoy these modifications (or not seek them, since having the freedom not to change is also an element of morphological freedom) are going to be primarily social.
This is perhaps the most controversial of all categories presented in this analysis. Whenever there exists an entity who is clearly alive, but who is not considered to be in a position to make the ultimate judgment call as to what happens to their mind and body, there exists much in the way of potential for ethical quandary. The agents in this category might be infants, minor children and adolescents, or adults who are unable to communicate in such a way as to render consent.
Clearly, all these non-consenting agents have rights, however, they cannot be said to have the same exact set of rights as consenting agents do. This is not, of course, due to any moral failing or culpability on the part of the non-consenting agent -- but rather, due to their developmental, morphological, and/or neurological circumstances.
A seven-year-old child might vociferously protest upon being told he needs to get a booster shot, however, if a parent conceded that the child did not actually have to get the shot, that parent would (rightly) be looked upon as negligent. However, that same seven-year-old does have some right to bodily autonomy -- the question is one of how far that autonomy goes, and how much (if at all) perceived "parental rights" or "social obligations" ought to infringe upon this autonomy.
In this framework, babies (even newborns) are considered to be "agents" because their existence is no longer intrinsically linked to being situated inside the body of another person, whereas fetuses are not agents because (as residents of another person's body) their rights do not override those of the mother. This analysis argues that a pro-choice position with regard to a parent's right to terminate a pregnancy (for any reason) is fully compatible with a stance against infanticide, and with a stance in support of the notion of providing lifesaving surgeries to infants by default. This stance removes the necessity of endless debates over the personhood, cognitive capacity, etc., of fetuses, which frequently tend to distract discussion participants from more pertinent issues (such as bodily autonomy and the "do no harm" mandate of medicine).
In the case of adults, an example of a non-consenting adult agent might be someone with a serious communication disability whose wishes cannot be understood by those around him or her. Until a viable means of communication can be established, it falls to the person's loved ones, family members, and friends to make important decisions on his or her behalf. Clearly it would not be acceptable to let a non-speaking adult suffer from a painful ear infection (for instance) simply because their consent to antibiotic treatment could not be established; there is definitely a great need to establish a coherent "ethics of treatment" for the particular case adults with communication-affecting disabilities.
The primary challenge here is avoiding both undertreatment (e.g., assuming an injury or illness isn't painful because the person is not complaining in a standard way) and overtreatment (e.g., sedating or physically modifying a patient for the sake of "convenience"). Ideally, in order to meet this challenge, every attempt should be made to establish a workable communication system for the disabled person. There are numerous (and under-utilized) alternative communication devices available on the market, some of which can be operated by individuals with very minimal motor capacities. It cannot be assumed in every case when a person is deemed "non-communicative" or incapable of complex thought that this is actually so; far more effort needs to be made in terms of providing opportunities for such persons.
Anne McDonald, who has severe cerebral palsy (and who was growth-attenuated through negligent dietary restriction as a child, though she later grew to adult size), writes:
My motor skills are those of a 3-month-old. When I was 3, a doctor assessed me as severely retarded (that is, as having an IQ of less than 35) and I was admitted to a state institution called St. Nicholas Hospital in Melbourne,Australia. As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk...At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years. In the ultimate Catch-22, the hospital doctors told the Supreme Court that my small stature was evidence of my profound mental retardation. I've learned the hard way that not everything doctors say should be taken at face value.
One can only imagine how many more individuals like Anne McDonald end up languishing (in institutions or otherwise) for years because of the assumptions people initially made about their mental abilities; the difficulty in such cases has always been a combination of prejudice, ignorance, and the tangible technical uncertainties of establishing that a severely disabled person is actually communicating something in particular. The bad news is that the prejudice remains difficult to root out (mainly because most people are horrified by the idea that their own views might be prejudiced, and have difficulty distinguishing between having this prejudice pointed out and having their character attacked.) The good news is that the technical uncertainties and difficulties of determining a seriously communication or motor-disabled person's wishes, needs, and wants are capable of being remedied.
Emerging technologies hold great promise here. Brain-computer interfaces in particular might very well end up enabling communication for persons who today cannot even make use of devices like eye gaze boards. By focusing on establishing communication, and directing research efforts toward the assistive-communication area of technological development, the problem of consent is more likely to be ethically remedied because the persons in question will have the means to communicate their own wishes and describe their sensations and thoughts. Imagine a world in which there is no way to tell whether a person you meet in Second Life is using a keyboard, a voice-activated control system, or a brain-computer interface -- this world might not actually be very far off, and "virtual communication space" could very well end up being a tremendous opportunity facilitator for severely disabled persons.
There are two items listed in the Non-Consenting Agents category: Externally Imposed Modification and Lifesaving or Basic Health Restoring Treatment.
Externally Imposed Modification is defined here as being modification that is not chosen or consented to by the agent receiving it (who may be a child or an adult). This type of modification is considered to refer to actions taken that are not directly related to lifesaving efforts. Examples of actions that would fall into this category range from "simple" modifications (like haircuts or ear piercing) to "complex" modifications ("enhancements", surgeries that would normally be considered elective, cochlear implants, cosmetic procedures, etc.).
Overall, modifications to non-consenting agents should probably be kept to a minimum, with more caution and hesitation occurring in proportion to the level of invasiveness of the procedure. Children and persons with disabilities represent vulnerable populations, and therefore require rigorous protections against abuse and untoward experimentation.
In the real world, modifying another person's body or brain through invasive or irreversible means is not in any sense trivial, and while I strongly support the rights of persons to modify themselves per their goals and desires (with very little regulation standing in their way), I assert that the notion of modifying others is heavily complicated by power relations and deserves very careful scrutiny.
Lifesaving or Basic Health Restoring Treatment is defined as being a procedure performed on a child, infant, or adult with the intent of saving their life or correcting a dangerous or painful health issue that directly and primarily effects the patient. Few would argue against this type of treatment, and in fact, one of the primary aims of disability advocates is to assure that all persons are accorded lifesaving treatment when necessary regardless of disability status.(1)
Since livesaving and basic health restoring treatments already exist in some forms, the "emerging and future technologies" aspect of these treatments applies mainly to the fact that we are developing new means every day to save people who would otherwise die. Just a few generations back, if your heart stopped, you were pronounced dead; then came the defibrillator. And additionally, now, people can be kept alive in comas or states of undetermined awareness for years -- this situation in particular might very well serve as a starting point for mainstream discussion of reanimating cryonics patients.
A pre-potential person, for the purposes of this discussion, refers to the idea of a person and encompasses a particular action being taken that will affect or make existent a potential person. Examples of pre-potential persons are isolated male and female gametes (that may or may not be brought together to form an embryo), and the germ cells of individuals who would modify those cells with the intent of making their children come out a certain way (for example, deleting a familial gene sequence that makes carriers susceptible to a particular form of cancer).
The population of pre-potential persons is vast and practically unknowable at this point, since it consists of everyone who could or might be born in the future.
There are a lot of grand, overarching theories and frameworks that might be invoked in attempts to make a case for "engineering" a particular kind of future generation, however, I suspect that any single framework is likely to be unrealistic.
If you've ever lived in a gated community, you've almost certainly been subject to a lengthy list of rules and regulations regarding the appearance of your home -- no bright curtains, no garden gnomes, basically nothing that deviates too far from beige.
These regulations are in place in order to maintain property values; difference is perceived as being something that degrades its surroundings. You might have access to manicured parks, golf courses, pools, shops, and other establishments -- all nestled behind the same stone, brick, or iron barrier.
People living on the inside nurture a strange melange of security and paranoia. The sense of being surrounded by a wall makes some breathe a bit easier at night, but at the same time, there's a kind of anxious undercurrent in how the neighbors relate. Everyone's house somehow manages to become a reflection of everyone else's house. Everyone somehow becomes perceived as responsible for the comfort and even the financial well-being of everyone else. And resentment festers beneath the din of neighborly small-talk, affecting the decisions people make, and quietly enforcing homogeneity over time, but never really coming to a head to be examined more thoroughly.
Of course, the above represents an exaggerated and stereotyped description of a gated community. But "gated community" is the image I frequently tend to get in my head while reading some people's notions of what the future ought to look like. It isn't exactly an encouraging image; in fact, I find it to be rather nightmarish. Yes, people might feel safer, and yes, some particular real risks might indeed be mitigated. But "gated community" thinking as applied to the future of sentient life seems to doom that future to a self-perpetuating cycle of suboptimization -- only "approved" configurations will be permitted to exist in the first place, and it will become more and more difficult not to see differences as defects.
An oft-repeated fear is that a "genetic divide" will emerge as a result of transformative technologies, and that this will represent a state of ethically unacceptable "inequality". I do not share this fear; I think it's quite wrongheaded in fact. Not because we don't have other kinds of divides that truly do exist and that need to be addressed (we certainly do), but because attempting to frame genetic (or other) diversity as inherently divisive between the "haves" and "have-nots" is a practice that masquerades as empiricism, but is fundamentally tainted with normative bias.
In order to truly make ethical, appropriate use of emerging biotech, this bias needs to be rooted out and exposed wherever it exists.
Otherwise, we could very well end up with a future in which progress actually slows (and I mean progress in both the ethical and the technological sense) because people become too fearful of novelty and atypicality. I am quite certain, for instance, that some of the knee-jerk negative reactions to questions like, "What if everyone lived to over 120 years of age?" that persists today is due to people being terrified of a future in which old people stick around much longer, in which "retirement" is replaced with "periodic hiatus", and in which the whole concept of getting one's "inheritance" is thrown out the window.
People who think they are being progressive by advocating maxims that are unapologetic about preserving the status quo under the guise of "eliminating suffering" are effectively shooting themselves in the foot, so to speak.
So when thinking about the space of pre-potential persons, it is perhaps important to make sure that you are not committing the "gated community fallacy" and assuming that one single, well-controlled idea about what the future should look like is going to somehow be able to dominate.
The future I imagine, analogy-wise, looks basically nothing like a "gated community"; instead, homes vary widely in size and appearance. There are cottages, ancient preserved and renovated mansions, gutted office buildings filled with colorful blanket forts. There are brick homes, metallic domes, and dwellings made entirely of Lego blocks. There are some clusters of houses that might look homogenous, but not because some housing association insisted on it; some people just happen to like the same look. There are cabins and trailers and tents. There are caves and hobbit-holes and tiny, floating islands. There are chic apartments atop barbershops and restaurants. There are dormitories. There are old hotels. There are three-story Victorians. There are synthetic igloos. Etc.
Potential persons are distinguished from "pre-potential persons" in that the potential person is "further along" the process toward possible incarnation as a person. Additionally, once an entity reaches the potential person stage, certain variables and conditions have been "set" to an extent that is not true for pre-potential persons. Pre-implantation genetic diagnosis, for instance, deals with embryos -- embryos are potential persons rather than pre-potential persons because they represent a particular joining of gametes, and at the same time, embryos are potential persons rather than actual persons (or "agents") because they are not conscious and cannot be said to have interests of their own.
I would also classify fetuses as potential persons up to a certain point, however, I do think that some distinction needs to be made between a very early-term fetus and a late-term fetus, since the latter is at least more capable of feeling pain than the former. And I also realize that consideration of fetuses may change drastically as better incubators and "artificial wombs" are eventually developed; the "can survive outside the [natural] womb" criterion for viability may soon be a thing of the past, which will certainly bring up new debates.
Additionally, when discussing procedures and philosophies that apply primarily to future hypothetical generations, it is important to take into account what motivations underly these procedures and philosophies. While it may be true that there is nothing wrong with advising expectant mothers to practice good nutrition and get regular checkups to monitor her health and the health of the fetus, there is a definitive difference between recommending common-sense care and engaging in scaremongering about the "burden" of "suboptimal" children.
We are entering an era of greater ability to exercise choice with regard to the configuration of future generations than ever before, and discussing the implications of this increased range of choice for marginalized populations should not be mistaken for "conservatism" or technophobia.
Alice D. Dreger writes in the Bioethics Forum article,
Liberty and Solidarity:
May We Choose Children for Sexual Orientation?:
Sure, it ought to be the case that defending the rights of parents to use this technology doesn’t ultimately undermine queer rights, but it seems hard to believe that in practice it won’t lead to support of the idea that one ought to try not to have a gay child – just as in practice the prenatal test for Trisomy 21 (Down Syndrome) has led to a general attitude (at least among the vast majority of my very “progressive” childbearing acquaintances) that one ought to try not to have a child with Trisomy 21. I have a friend whose young son has Trisomy 21. This friend was out and about with her son one day, when another woman looked at her and her son and – recognizing that the son has Down Syndrome – scolded my friend with the question, “Didn’t you get the test?!” I can fully imagine a scenario where, thirty years from now, a woman tells a friend her son has come out as gay, only to have the friend respond, “Didn’t you get the test?!” Could we really imagine that offering such a test would have no negative impact on how an already-homophobic culture views people who are gay (and their parents, for that matter)? In that sense, can we really imagine that supporting parents’ right to choose against homosexuality supports the message that gay people are as good as straight people?
Perhaps the best guide to the application of these emerging technologies is found in studying historical context; since banning these technologies outright is both undesirable and impossible (the "genie is out of the bottle", so to speak), it is important to attempt to guide their application while keeping in mind lessons of the past.
In particular, it would be prudent to look at how things that seemed "normal" or fashionable in the past are now looked upon as ignorant, silly, or cruel. People living in any given era tend to have difficulty thinking outside their own temporal and cultural box; things that are actually quite malleable are assumed impervious, and prejudices are mistaken for logic. By looking at the prejudices of the past and how they managed to fuel pseudoscience and oppression, we can work toward making sure that new technologies will be applied in ways that truly do contribute toward a more humane and healthy world. I am entirely optimistic that this is indeed possible, but it will require constant ethical vigilance, democratic considerations, and a healthy respect for pluralism.
(1)Transhumanists and technological progressives will be in a position to fight a very similar battle when modification technologies become more widely integrated into common use, since modified humans and cyborgs may still be considered monstrous, grotesque, and "unnatural" by some at that point. There may be a need for anti-discrimination laws pertaining to proper medical treatment of the modified, particularly if one's modifications are directly responsible for maintaining one's life in the first place -- right now people who depend on ventilators or feeding tubes are unfortunately still subject to "yuck factor" reactions and statements along the lines of, "Well, I wouldn't want to be kept alive artificially!" Tomorrow's cyborgs will almost undoubtedly face similar challenges, particularly if the trend toward biology-hardware integration continues.