NIcholas Kelly Final Bioethics Paper

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Nicholas Kelly

Bioethics
Final Paper
A defense of modest genetic enhancement

Genetic engineering has never been so plausible. Recent developments in genetics have

significantly lowered the barrier to entry into genetic experimentation. With these changes have come

increased calls for prohibitions on researching and developing these new technologies. However,

genetics are not destiny, even in an age of potential engineering. Now more than ever it is clear

enhancing humanity is not as simple as plugging in one new gene. Ethics must respond to scientific

developments, but it must also be shaped by reality. An increasing body of evidence suggests that many

of the most compelling arguments for prohibiting human genetic enhancement are based on unrealistic

understandings of what the technology can and cannot do. The interventions that many find most

concerning, physical and cognitive enhancements, would require modifying dozens or hundreds of genes

and provide only limited results. Meanwhile, the least objectionable genetic changes, curing genetic

defects, are often the simplest because they require fewer edits to better understood genes. Restricting

the possible and desirable based on the theoretical and undesirable is a poor course.

This paper will argue two related points. First, inheritable human genetic treatments through

genetic germline editing (GGE) should be permitted because the benefits outweigh the reality of the

consequences. Second, that the therapy/enhancement distinction that many ethicists use to divide

permissible and impermissible intervention should be discarded, and our concerns should be focused on

developing techniques that are safe and useful. There may be interventions that should be prohibited,

but not based on these distinctions. Considering these two points along with the potential benefits of

these techniques, it is desirable for our society to permit parents to choose some germline enhancements

for their children. This is not a proposal for immediate implementation of genetic enhancement; even

the strongest proponents agree that it will be years before it is sufficiently safe for human use. This paper

operates on the assumption, shared by many in the field, that this technology will one day be sufficiently

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safe and accurate for human use. While we cannot prove that germline enhancement will certainly be

safe, we also cannot prove it never will be; therefore, in the face of it plausibly becoming safe, the more

prudent course is to consider the issue and devise rules while we have time to deliberate. Essentially, this

argument will treat as its baseline the likely future commercial implementation of current clinical

techniques and proscribe realistic principles for regulating those techniques.

CRISPR/Cas9 and GGE

CRISPR (pronounced crisper) stands for Clustered Regularly Interspaced Short Palindromic

Repeat; the name refers to a technique that certain bacteria species use to defeat attacking viruses.1 The

bacteria copies part of the virus DNA and attaches it to an DNA-sundering enzyme called Cas, which

uses the virus DNA sample to find and destroy matching strands. 2 In 2012, using a specific and more

effective version of Cas called Cas9, researchers invented a biological version of find-and-replace

one that could work in virtually any species [the inventors] chose to work on. 3 CRISPR/Cas9, often just

called CRISPR, permits scientists to precisely excise targeted genes, which are then replaced with other

genes chosen by the scientists.4 This makes genetic engineering cheaper and more practical than ever.

Due to its unprecedented precision, academics have hailed CRISPR as a revolutionary advance in

genetics, with possible applications ranging from reviving extinct animals to ending the threat of

malaria.5 With this great potential comes great concerns as well, specifically with regards to the potential

use of CRISPR in GGE.6 GGE consists of modifying DNA in reproductive cells that pass DNA from

parent to child.7 GGE editing could be used to eradicate genetic diseases, but it could also be used to

1 Abigail Beall, Genetically-modified humans: what is CRISPR and how does it work?, WIRED (FEB. 5, 2017),
http://www.wired.co.uk/article/crispr-cas9-technique-explained.
2 Id.
3 Carl Zimmer, Breakthrough DNA Editor Born of Bacteria, QUANTA MAG. (Feb. 6, 2015),

https://www.quantamagazine.org/20150206-crispr-dna-editor-bacteria/.
4 Id.
5 Beall, supra note 1.
6 Cormac Sheridan, CRISPR germline editing reverberates through biotech industry, 33 NAT. BIOTECHNOLOGY, 429, 431 (2015)

(reporting on the IGI forum on Bioethicists call for a moratorium on germline editing research).
7 NATL ACAD. OF SCI., ENGINEERING, AND MED. HUMAN GENOME EDITING: SCIENCE, ETHICS, AND GOVERNANCE

2 (2017) [hereinafter HUMAN GENOME EDITING].

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enhance humanity beyond what is currently possible.8 This second practice is controversial both because

of the potential dangers it poses to its subjects and because of underlying concerns regarding the ethics

of engineering humanity, with some critics explicitly comparing it to the eugenics movements of

previous centuries.9 The appropriate regulation of this technology is controversial to say the least.

While many scientists have called for a moratorium on human germline editing, others are

skeptical that that is practicable.10 Simply put, the genie may be out of the bottle; CRISPRs simplicity

has led to the conclusion that GGE is inevitable.11 That is debatable, but regulation of this technology

has still never been more salient. Even if the latest advances in genetics dont lead to the full range of

interventions that many scientists believe will become available in the future, it is more prudent to

attempt to establish those principles now than to wait until the techniques are being implemented. For

this paper, the assumed level of functionality is that a doctor can confidently remove one or more

segments of DNA and replace those segments with specified alternate segments, which are chosen based

on sufficient knowledge of genetics to be confident within a reasonable degree of medical certainty of

what the gene does. Its impossible to form meaningful assumptions about how much well know about

genetics in 20 years, but given what we know about the state of technology, this level of accuracy and

safety is plausible.

Somatic and Germline Interventions

Historically, there has been a split in bioethics about somatic germline editing (SGE) and GGE,

with far more opposition to the former. 12 Some degree of increased opposition or caution is to be

expected; GGE necessarily has the potential for greater mishaps than SGE because a defective gene

introduced through SGE would usually only impact one person, but that same defective gene would

8 Carolyn Brokowski et al., Cutting Eugenics Out of CRISPR-Cas9, 6 ETHICS IN BIOLOGY, ENGINEERING AND MED.: AN
INTL J. 263, 263 (2015)[hereinafter Eugenics Out of CRISPR].
9 Id. at 270
10 Katrine S Bosley et al., CRISPR germline engineering the community speaks, 33 NAT. BIOTECHNOLOGY, 429, 478 (2015).
11 Id. at 47879.
12 HUMAN GENOME EDITING, supra note 7, at 91100 (laying out the general landscape of opposition to germline

intervention).

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have the potential to manifest and be passed to offspring through GGE. However, concerns go far

beyond the acknowledgement of an increase in the potential impact of a defective intervention. As stated

previously, this paper is working from the assumption that the technical issues are solvable and that we

should be developing rules for the best possible version of this technology. The concern here is not

whether it works, but what to do if it does.13 It is only under these conditions of safety and

understanding that GGE should be done; to the extent the technology is far from that standard of

reliability and safety, I am in complete agreement with those who oppose diving into the practice.14

This section of the paper will be focusing on promoting therapeutic GGE; though the

distinction between therapy and enhancement will later be shown to be not as strong as many suggest, it

is a structural conceit that is common throughout the literature on this topic and will be useful for

organizing the argument.15 This analysis will focus on curing diseases, which is the weaker but universally

agreed upon definition of therapy, which excludes prevention of disease by boosting human immunities.

During the discussion of whether enhancement should be permitted, it will be taken as a given that the

enhancement in question is GGE, which should justify SGE a fortiori. First, we will examine the common

arguments against GGE to determine if they hold water, given an assumption of safety and efficacy. If

the case against is weak enough to proceed, the discussion can shift to the case in favor of GGE.

One common critique of GGE is that it is an attack on the autonomy of the unborn. This takes

a few forms. Jrgen Habermas, for example, generally opposes GGE because any change to our default

genetics constitutes a limitation on autonomy. 16 When a change is made to a childs genome, it alienates

that child from their ability to distinguish their natural self from their social self.17 In doing so, the childs

13 A great deal of the current opposition to germline editing is from those who understandably doubt that it can be used
safely anytime soon. While this is completely logical, it is outside the scope of this piece. HUMAN GENOME EDITING,
supra note 7, at 9394.
14 E.g., Edward Lanphier et al., Dont edit the human germ line, 519 NAT. 410 (2015).
15 HUMAN GENOME EDITING, supra note 7, at 94 (directing readers away from the germline discussion to a separate

chapter to read about enhancement, though that enhancement chapter acknowledges the difficulty in fully forming that
distinction).
16 Jonathan Pugh, Autonomy, Natality and Freedom: A Liberal Re-examination of Habermas in the Enhancement Debate., 29

BIOETHICS, 145, 147 (2015) (defending and clarifying Habermass objections to germline editing).
17 Id. at 146.

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ability to conceive of themselves autonomously is compromised because they lack the reference point of

their own natality, meaning their own phenomenon of birth where they were born into the social

setting that influences them. This reduced conception of autonomy in turn impacts their actual ability to

act autonomously. This is a difficult argument to respond to in the sense that it has premises that are not

obviously true and developed through Habermass larger body of work. However, as a beginning point,

the mechanism of how ones genetics influence ones natality. Habermas denies that his position is

genetic determinism, arguing instead that the change he is concerned with would take place in the mind

after the child learns of their modification.18 It is the reaction to this information that provokes the

damage to ones autonomous conception. This seems to present a tension though. If our identity is

shaped by the social and we have our inherent natural fate, how can we say that all humans will react

in this specific negative way to learning about their own genetic editing, no matter the context of that

disclosure? Does reading an in-depth report by the doctor who engineered dozens of your genes

provoke the same response as hearing in casual conversation that you had some unknown gene changed?

This is further complicated by the fact that Habermas ascribes the same harm to embryo screening that

he does to GGE, because both reduce the subjects understanding of autonomy. 19 The weak form of this

argument, that some people suffer some form of psychological harm or autonomy impairment, is

difficult to rebut.20 However, the strong form of the argument, that all people will respond to this broad

set of stimuli by having their autonomy impaired in a specific way is at odds with the autonomy that

Habermas centers in his argument. The weak form does not do enough work to justify a prohibition; if

anything, it suggests we should research if the psychological harm that concerns Habermas has

manifested in the thousands of people who have been born through embryo screening to determine if

this problem is real. If it is, then it can be weighed against the potential benefits of GGE.

18 JRGEN HABERMAS, THE FUTURE OF HUMAN NATURE 53 (2003).


19 Id. at 83.
20 Daniel C. Heinrich, Human Nature and Autonomy: Jrgen Habermas Critique of Liberal Eugenics, 18 ETHICAL PERSP. 249,

266.

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Another formulation of the autonomy argument is that GGE has the potential to alter character

and thus autonomy in a morally-negative way.21 Robert Sparrow focuses on interventions that can

impact a persons mental or emotional state, arguing that these are dehumanizing and autonomy-

reducing because they treat the person as an object to be acted upon. 22 In emphasizing this

objectification, Sparrow distinguishes GGE from moral education and the like by noting that even

education of a child involves communicative acts, which implicitly frame the student and teacher as

moral equals in some sense because they are both members of a linguistic community.23 Biological

Acts, on the other hand, are performed by actors upon objects (fetuses etc.). Thus, while moral

education may not constrain freedom, genetic intervention does by manipulating the person as an object

rather than engaging with them as a human.

This account misses that GGE as it is typically proposed is in the context of parental decisions

about their children. While it is true that parents parent their children as fellow humans who have been

born, the truth is that parents exercise extensive manipulation and control of children from their birth, a

point which significantly predates any potential for moral education. Legally and socially, parents own

their children, subject to certain baseline welfare concerns; the Supreme Courts basis for finding

compulsory public school unconstitutional was that it violated the rights of parents to control their

childrens upbringing; this is not a right to look out for your child but an explicit right to control your

child.24 Even in the case of childrens civil rights, they are often explicitly collapsed into those of the

parent.25 This same phenomenon can be seen in custody cases, where parents have legally recognized

interests in controlling their children that are distinct from any analysis of the childs needs and interest

21 Robert Sparrow, Better Living Through Chemistry? A Reply to Savulescu and Persson on Moral Enhancement, 31 J. OF APPLIED
PHIL. 23 (2014).
22 Id. at 26.
23 Id.
24 Barbara Bennett Woodhouse, "Who Owns the Child?": Meyer and Pierce and the Child as Property, 33 WM. & MARY L. REV.

995, 11001110 (1992).


25 Id. at 1115 (citing Wisconsin v. Yoder 406 U.S. 205, 230242 (1972) (explaining that compulsory schooling is

presumed to be an infringement on the rights of parents, not children).

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and those interests are adjudicated in the way one would adjudicate competing claims on property. 26

These decisions form the constitutional backbone of contemporary family law, and the patriarchal

philosophy undergirding them has been enshrined into our substantive due process. 27 Parents can deny

their children medical care on the grounds of personal preference, and most states explicitly provide

religious exceptions to laws prohibiting child neglect and abuse. 28 This is not to denounce parenthood or

American family law. Rather, all of this is to say that phenomenologically, the relationship between

parents and children goes far beyond that of the linguistic community members that Sparrow identifies.

If it is parents that are choosing these edits for the children, which is the generally proposed form, then

the autonomy concern is not as robust as it would otherwise be. Above certain harm baselines which are

implicitly accounted for in this arguments safety assumptions, germline engineering falls well within the

parameters of normal parental authority. Under a more purely liberal approach we might say that

extensive GGE could restricts childrens autonomy by guiding them towards one path or another, but

those liberal principles would be out of step with our social norms.

This relates to a third version of the autonomy argument focuses on the inability of the unborn

to consent to genetic modification of any sort. 29 While the nature of the obligation that now living

people owe to unknown future people who do not exist is an ethically interesting one, it is not actually of

very much importance in responding to this. Humans generally and parents specifically make all manner

of decisions that impact the lives of future generations in more ways than we could ever measure and

future persons do not consent to any of them. It would be impossible to do otherwise. Some of these

impacts are intentional, such as long term climate change regulation. Others are accidental. If our

approach to germline editing is guided by the same principles of concern for the wellbeing of future

26 Id. at 1048.
27 Id. at 1113.
28 Aleksandra Sandstrom, Most states allow religious exceptions from child abuse and neglect laws, PEW RES. CTR. (Aug. 12, 2016),

http://www.pewresearch.org/fact-tank/2016/08/12/most-states-allow-religious-exemptions-from-child-abuse-and-
neglect-laws/.
29 E.g. Francis Collins, Statement on NIH funding of research using gene-editing technologies in human embryos, (Apr. 28, 2015),

https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-
editing-technologies-human-embryos.

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persons as are other actions are or should be, then this is no more of a moral issue than other decisions

we make that will impact the world of the future. Children do not consent to neo-natal vitamin

supplements and they do not consent to the use of lead paint in what will one day be there nursery. If

germline editing is more like the former than the lack of consent is acceptable for the same reason it is

acceptable for the vitamins; if germline editing is more like the latter than it should not be conducted

under the premises of this argument and is objectionable for the same reasons as the lead. Like with any

other intervention taken on behalf of future people, germline editing should be assessed based on the

harm potential of specific interventions.

The other response to the autonomy argument is to note the potential autonomy-increasing

consequences of germline editing. The most obvious version of this argument is the increased autonomy

of a healthier world. One could certainly quibble about how to value the increase in autonomy that

followed the eradication of smallpox, but its difficult to contest that removing a source of disease and

pain did in fact improve peoples autonomy. In the same way, we can imagine the improved outcomes of

a world with reduced genetic diseases.30 Overtime, GGE that corrected for various mental conditions

could lead to increases in values such economic productivity31 and civic virtue,32 both of which improve

the overall quality of society and may offer increased autonomy. This is not to say that these

improvements will necessarily materialize or outweigh any damage to autonomy that GGE could entail,

but it isnt clear that GGE will reduce autonomy.

The final argument against GGE is the most emotionally potent: that GGE will promote

eugenics.33 Its true the 20th centurys authoritarian eugenics movement sought to improve public health

through controlling which heritable traits are passed down through reproduction and that the same

improvement is a justification employed in this very paper. Indeed, GGE advocate Nicholas Agar refers

30 Christopher Gyngell et al., The Ethics of Germline Gene Editing, in J. OF APPLIED PHIL 1, 1112 (2016) [hereinafter
ETHICS OF GGE].
31 Allen Buchanan: Enhancement and the Ethics of Development, KENNEDY INST. OF ETHICS J. 18 (2008).
32 Will Jefferson et al., Enhancement and Civic Virtue, 40 SOCIAL THEORY AND PRAC., 499 (2014).
33 E.g., Eugenics Out of CRISPR, supra note 8.

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to his proposal as liberal eugenics, and he is not the only one. 34 Agars position is that GGE of any type

is within the sphere of autonomy traditionally afforded to parents, comparing it to choices in upbringing.

He justifies this under a Rawlsian framework, delineating between GGE that impacts a persons

capacities (health, intelligence, etc.) and GGE that influences their life plan, meaning their conception of

the good life.35 Agar argues that it is permissible to engineer someones capacities, it is not permissible to

engineer their life plan, because that infringes on autonomy. Capacities are to varying degrees amenable

to GGE, though he notes that intelligence is particularly difficult to engineer.36 However, he goes on to

note that a life plan has much more to do with parenting and environment than it does with genetics and

that a modern liberal society has a greater array of reasonable life plans available than ever before, which

causes new people to have a greater array of possible life plans.37 Like many critiques of GGE, the

eugenics argument assumes a degree of genetic determinism that is just not substantiated by our actual

knowledge. Therefore, he concludes that society should generally permit GGE to the degree that

capacities are not imbalanced to the point where a person is poorly-suited to pursue a reasonable array of

life-plans.

Autonomy is at the center of liberal eugenics. To reframe an earlier point, parents exercise

control over their childrens genes every time they chose a reproductive partner. Though we may not

think of it in these terms, humans have been purposefully altering our own genome for nearly the

entirety of our history. The intent that humans will soon be able to apply is just a little more specific than

current options. Beyond our own gene pool, humans have been driving evolution across the globe

through our ecological impact for centuries if not longer. 38 Having seen the horrors of authoritarian

eugenics we still have no objection to people considering the outcome for their children when they pick

a mate. Our society openly permits the selection of sperm and egg donors based on genetic health. One

34 Nicholas Agar, Liberal Eugenics, 12 PUB. AFF. Q. 137 (1998).


35 Id. at 139143
36 Id. at 146.
37 Id. at 147147.
38 Stephen R. Palumbi, Humans as the Worlds Greatest Evolutionary Force, 279 SCIENCE 1786 (2001).

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of the most common justifications given for our societys incest taboo is an explicit concern for the

reproductive consequences. If we are willing to accept that parents already make many choices that

influence the gene pool, what is the problem with them doing so intentionally?

To put it provocatively, what is wrong about authoritarian eugenics? A few answers spring to

mind: compulsion, violence, discrimination against minorities and those possessing undesirable

phenotypes. There are undoubtedly more, but the point is that none of these overlap with liberal

eugenics at the surface level. However, liberal eugenics cannot escape its ugly brother so easily. Dov Fox

embraces all of Agars points regarding autonomy and parental discretion to engage in GGE. 39 However

he notes that the same liberal principles that permit the paternalism of compulsory vaccination and

education lend themselves to mandatory GGE, with only a lack of bigotry separating our society from

the worst of authoritarian eugenics.40 Fox defines Rawlsian natural primary goods as those health traits

that any rational person would desire. Like education and immunization, these fit a universal notion of

the good. Therefore, justice demands that we provide them for everyone, even those who do not want

them.41 Fox believes that this synthesis of liberal eugenics and the liberal paternalism demonstrates that

liberal eugenics has not provided an accurate internal moral account of itself; liberals because though

they believe they are comfortable with both parts but will generally not accept the whole because they do

not actually accept the full implication of the parts. If Fox is right, then society cannot accept liberal

eugenics without opening an easy door to eugenics that are at the very least compulsory, if not as

authoritarian as their predecessor.

As elegant as this critique is, it does not defeat GGE. Fox notes that childrens bodily autonomy

as well as parents childrearing authority is at times compromised in the interests of children; as noted

above, children must go to school even if their parents object. Therefore, Fox argues, we have already

accepted infringements upon autonomy to serve those interests of children we meet paternalistically.

39 Dov Fox, The illiberality of liberal eugenics, 20 RATIO 1, 47 (2007).


40 Id. at 14.
41 Id. at 10.

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However, this is where the analogy breaks. Authoritarian and liberal eugenics both concern themselves

with future children, but they accomplish their goals by acting before the children are born, on the

parents. GGE must target each parents sexual cells before reproduction or the zygote shortly after

fertilization. So, what he proposes is not an infringement on childrearing authority to protect an existing

child, but an infringement on bodily autonomy to protect a future child. There may be arguments for

that practice, but they are not consistent with the liberal framework employed here or the value our

society places on a competent adults bodily autonomy. We require that parents give their children

baseline nutrition, we dont mandate folic acid supplements to enhance fetuses. While there are

individuals who believe a zygote has enough moral value to compel action in its interests, those are likely

not the same people advocating for GGE.

There is a sub-category of liberal eugenics that does raise plausible concerns: female infanticide.

While this is not and seems unlikely to become a concern in the United States, it is a very real

phenomenon in some other countries where male children are considered more valuable than female

children. The full consequences of the resulting gender imbalance will not be known for years, but there

are already significant concerns about crime and social instability.42 In practice, it would likely be simpler

to employ PGS to screen zygotes sexes rather than use GGE to alter them. However, that does not

make it any less true that firm restrictions should be put in place on sexually altering zygotes with GGE.

A current rule used by fertility some clinics is to only offer sexual selection services to families seeking to

balance out their children, 43 this is a prudent rule that should be adopted as a policy in areas where

pervasive infant sex preferences threaten to create disruptive gender imbalance.

There is also a weaker eugenics-lite argument, which instead of actual eugenics posits a sort of

genetic caste system, where differences in genetic endowment fuels further inequality in our society: 44

42 Therese Hesketh & Jiang Min Min, The effects of artificial gender imbalance, 13 EMBO REP. 487, 491 (2012).
43 Sandel, supra note 70.
44 Eugenics Out of CRISPR, supra note 8 at 270.

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the Gattaca scenario.45 Though Gattacas society employs widespread embryo screening instead of

genetic enhancement, it presents a grim picture of a future that is defined by genetic castes and

discrimination. However, the ultimate issue with Gattacas society isnt the genetic discrepancy per se,

but rather that society is so geared towards acting on it inappropriately. Discrimination based on genetics

is already a recognized hazard in our own society with its mostly un-altered genomes, which is why it was

outlawed in the United States ten years ago under the Genetic Information Nondiscrimination Act

(GINA).46 Genetic testing and the incentive to use it unjustly will exist regardless of how substantial

actual genetic differences are; computers and cheap testing equipment will make the transaction cost so

low that even a minor marginal profit will rationally justify it, which is why employers are currently trying

to have GINA weakened.47 In fact, is should be strengthened by incorporating the sort of disparate

impact analysis that is present in other landmark employment discrimination laws, an addition that the

original Act explicitly contemplates.48 The market for private genetic testing is exploding, and with that

comes further dangers of private genetic information being disclosed and put to nefarious ends; this is an

excellent example of an area ripe for further regulation.49 Genetic discrimination is a real threat, but it is

already here and restricting science wont change that; firm anti-discrimination laws will.

The final argument against GGE is also rooted in social equality. If genetics in fact contribute to

accomplishments in life, GGE may have the potential to compound existing inequalities as the rich give

their children genetic advantages.50 In that regard, GGE is not immoral per se but rather a typical benefit

45 The 1997 movie Gattaca takes place in a future where ubiquitous embryo screening has created a divide between those
subject to genetic selection with strong genetic profiles (valids) and those born naturally who are subject to genetic
disorders (in-valids). Though genetic discrimination is ostensibly illegal, it is widespread due to government genome
registration and mandatory genetic tests as a prerequisite to finding employment. In-valids are relegated to low-status
work and subject to social stigma.
46 Pub. L. No. 110233, 122 Stat. 881.
47 Lena H. Sun, Employees who decline genetic testing could face penalties under proposed bill, THE WASHINGTON POST (Mar. 11,

2017), https://www.washingtonpost.com/news/to-your-health/wp/2017/03/11/employees-who-decline-genetic-
testing-could-face-penalities-under-proposed-bill/
48 U.S. EQUAL EMPLOYMENT OPPORTUNITY COMMISSION, BACKGROUND INFORMATION FOR EEOC FINAL RULE ON

TITLE II OF THE GENETIC INFORMATION NONDISCRIMINATION ACT OF 2008


49 Stephen L. Hauser and S. Claiborne Johnston, Personalized Genetic Scans: With gifts like these..., 65 ANNALS OF

NEUROLOGY A7 (2009).
50 Eugenics Out of CRISPR, supra note 8 at 270.

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that may be bestowed unequally in society and that has the potential to worsen inequality. Health,

education, and social opportunities are just a few of the benefits privileged people can provide to their

offspring that help them achieve future success.51 We typically address this inequality in benefits by

regulating our society to ensure that differences political liberties do not attach to these disparities and by

enacting policies to equalize access to benefits.52 If GGE is going to be handled in a different manner

than private schools and braces, then we should first determine how it is substantively different from

those other benefits. But a society that will treat its weakest unjustly under GGE is likely to do so despite

its absence; how the most vulnerable are treated depends far more on our underlying social institutions

than on whether we permit GGE.53 Everyone believes that genetics are important to ones success in

life, but the pertinent question is how do genetics compare to other factors, primarily environment.

Genetic determinism pervades discussions of GGE on all sides. Its a natural outcome in a field

that is so dominated by the idea of a code that unlocks the secrets to human functioning. Given the

relative immaturity of our understanding of genetics, our ability to answer the question of just how

important genes are to who we are and how we will do in life is limited. There is no question that ones

genome has a real impact on how they do in life. The most recent research suggests that genetics have a

definite but small impact on success, as defined by several development metrics.54 Unsurprisingly,

there is no gene for education; there are a number alleles associated with educational success. The study

looked at 900 people and assigned them a polygenic score based on how many of those alleles they

had. It then determined if the men with higher scores did better in non-education measures of success,55

and they did. Furthermore, people with the genes for success tend to come from more successful

families, which makes sense since were looking at inheritable causes of success. There was no

51 David Resnik, Debunking the Slippery Slope, 19 THE J. OF MED. AND PHIL. 23, 36 (1994).
52 Id. at 37.
53 Julian Savulescu, Genetic interventions and the ethics of enhancement of human beings, in THE OXFORD HANDBOOK OF

BIOETHICS (Bonnie Steinbock ed., 2009).


54 Daniel W. Belsky et al., The Genetics of Success: How Single Nucleotide Polymorphisms Associated with Educational Attainment

Relate to Life-Course Development, 27 PSYCHOL. SCI. 957 (2016) [hereinafter Genetics of Success].
55 These included relationship success, physical health, geographic mobility, and financial planfulness, among others.

Id. at 959.

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correlation between the score and health. None of this is terribly surprising, considering that the score

was devised based on its known relation to educational attainment. What this does not show is that

genetics determines outcomes to a greater degree than environmental factors. Instead, most scholars

have come to the agreement that both are important and neither is deterministic.56 Environmental

factors impact the expression of genetic traits and genetic traits impact how individuals respond to their

environment. They can magnify the impact of the other or dampen it. They can also trigger feedback

cycles.57 The point is, a conception of success or health or any other complicated trait that is entirely

based on genetics is unrealistic. Our current scientific understanding does not bear out the idea of

genetic super-castes dominating everyone else. The more that geneticists learn the more they are

emphasizing increasingly complicated interplay between environment and genome. Furthermore, it is

essential to not take an increased understanding of the causation power of genetics as a reason to ignore

the importance of egalitarian social policy.58 Genetics can work hand in hand with social science to

improve outcomes for society.

The first argument in favor of germline therapy is, unsurprisingly, to treat genetic diseases.59

Treating genetic diseases (which roughly 6% of babies are born with) pre-birth is significantly cheaper

and easier than changing the genes in a fully grown human60 and GGE allows treatments that are

impossible under SGE.61 Currently, some of what could be done with effective germline editing is

accomplished now through Preimplantation genetic screening (PGS) and in-vitro fertilization. With this

method, multiple fertilized embryos are created and then tested for genetic defects. The embryo that is

healthiest or most desirable to the parent(s) is implanted and carried to term. In this way, many at risk

parents are already actively working to influence the genome that their child is born with. Others will

56 Frank M. Spinath & Wiebke Bleidorn, The New Look of Behavioral Genetics in Social Inequality: Gene-Environment Interplay
and Life Chances, 85 J. OF PERSONALITY 5 (2017).
57 Id. at 7.
58 Id. at 8.
59 Christopher Gyngell et al., The Ethics of Germline Gene Editing, J. OF APPLIED PHIL. 1, 2 (2016).
60 Id. at 2, 8.
61 Eugenics Out of CRISPR, supra note 8 at 267.

14
become pregnant and then have an abortion if they discover the presence of conditions like Downs

Syndrome; a recent meta-analysis concluded that fetuses diagnosed with Downs Syndrome are aborted

at a rate of approximately 67%.62 Some find the screening and termination of embryos problematic;

germline editing has the potential to drastically reduce those practices. Beyond that though, this indicates

that the basic use of germline editing is to do something that people are already doing now, purposefully

curating the genes they pass down to their children.

However, current screening technology is only effective with monogenic diseasesdiseases

caused by a single gene. A couple with at least one disease-carrying member must produce a few

embryos to ensure that they get at least one with healthy genes. Thats not always possible due to fertility

issues.63 Furthermore, some of the embryos that wont manifest the disease will still be carriers, and the

parents will presumably want to prevent a risk to their grandchildren if possible. This too increases the

number of embryos needed. However, even if it is possible to use PGS to help couples with monogenic

conditions like cystic fibrosis, it quickly becomes impossible for any couple struggling against a polygenic

condition. Polygenic conditions are caused by many traits in concert. For example, a recent study

suggested that major depression is a polygenic condition with over a dozen associated genetic

sequences.64 PGS would require literally hundreds of embryos to be reasonably confident of getting one

without the traits. Meanwhile, germline editing can address multiple negative factors at once; a recent lab

experiment executed more than 60 simultaneous changes in an animal embryo.65 While it is true that

many polygenic conditions have environmental causes as well, the elimination of the genetic factors

would still reduce the incidence and severity of these diseases. Furthermore, in the case of diseases like

cancer, it may be more realistic to improve our bodies defenses than it is to fully address carcinogenic

environmental conditions. GGE offers a way to accomplish the same goals as PGS, but on a much larger

62 Jaime L. Natoli et al., Prenatal diagnosis of Down syndrome: a systematic review of termination rates (19952011), 32 PRENATAL
DIAGNOSIS 142, 150 (2012).
63 Gyngell et al, supra, note 48 at 4.
64 Morgan Levine et al., A Polygenic Risk Score Associated with Measures of Depressive Symptoms Among Older Adults, 60

BIODEMOGRAPHY SOC. BIOL.199 (2014).


65 Gyngell et al, supra, note 48 at 4.

15
scale, both in terms of access and in terms of what individuals can screen for. Even if one attaches no

moral weight to embryo destruction, GGE has the potential to employ far fewer resources to accomplish

the same thing as PGS more reliably and more quickly.

Though GGE is classically thought of as something done to embryos pre-birth, it could be

introduced even before that. By modifying a parents germline before they even conceive, doctors could

ensure that beneficial genes are passed down to all their children. If humanity is serious about lowering

the incidence of genetic diseases, then employing technology that requires fewer applications and

presents fewer failure points is better. Many of these benefits may sound speculative, and in a sense, they

are. However, they are also based on the current predictions of scientists. Genetic diseases are a

pervasive problem, so any real solution will be proportional

In addition to the improvements for people treated with germline editing, there are also

significant research opportunities. Even the most strident opponents of germline editing acknowledge

that it presents an opportunity for ground breaking research, though these opponents may not believe

that it is worth pursuing. There is still so much that is unknown about the mechanics of DNA, and a tool

that would allow scientists to create controlled variant tissue lines to study could prove invaluable in

bridging that gap.66 The research potential extends beyond medicine and biology. As discussed earlier,

genetics are an increasingly central element of social sciences; the ability to do more extensive and

tailored research can only give us better data for understanding the impact of environmental factors and

assessing policy intended to alleviate or make use of those factors.

It is true that GGE has the potential to increase polygenic scores in the wealth and increase the

scores of the genetically well-endowed with the accompanying improvements in outcome. But it also has

the chance to improve outcomes at the lowest level, and that wont happen unless the technology is

explored and early implementations are accessible to those who can afford the price of cutting edge

technology. Social change is difficult and slow work, and supplementing it with optional GGE for those

66 Id. at 6.

16
who want to offer that opportunity is one way to uplift the socially disadvantaged. Undue genetic

determinism aside, this technology does offer the chance to make significant improvements to the

human condition by challenging the premises of our limitations. A blanket ban on GGE must have a

stronger showing than the speculative and intangible objections that define so much of the opposition.

Finally, it bears repeating that there is a real autonomy interest here. We do not stop parents

from sending their children to the best school they can or from reading to them at night or doing any

other of a thousand things that gain them an advantage in life. Its hard to imagine what our society

would look like if we decided we wanted to. Consistent with a reasonable interest of the childs best

interest, we should let parents make this choice for their children as we do other choices.67 We cannot

ensure or enforce real equality of opportunity. We can ensure an equality of access and we can take

affirmative steps to promote a more just society. GGE is not inconsistent with that and it offers

opportunities to better realize that goal. Altering humanities underlying health and capabilities is a long-

term project. A more immediately realizable one is eradicating dozens of painful and deadly monogenic

conditions. By permitting GGE, we can start on the latter while moving toward the former.

The Therapy/Enhancement Distinction

With the case for GGE established, the question becomes whether it should be limited to

therapy or extended to enhancement. This distinction between therapeutic editing and enhancement is a

central element of genetic ethics. The line is generally drawn between therapies, which cures diseases and

enhancements, which push the subject beyond human norms.68 Decades of survey data reveals that the

American public recognizes this distinction and is somewhat wary of genetic engineering generally but

much warier of genetic enhancement.69 It is no surprise that that this distinction retains its significance in

the world of ethicists. Michael Sandel argues that while therapy permits the sick to flourish, enhancement

67 Savulescu, supra note 53.


68 HUMAN GENOME EDITING, supra note 7, at 105.
69 HUMAN GENOME EDITING, supra note 7, at 107110.

17
will corrupt our appreciation of life and diminish the value of human achievement.70 However, as the

National Academies of Sciences, Engineering, and Medicine recognized in their report on genetic editing

earlier this year, that distinction is not as clear as it might intuitively seem. 71 Sandel doesnt define

enhancement in his arguments, though he partially describes it as individuals lift[ing] themselves above

the norm. 72 This seemingly intuitive reference point does not actually offer much guidance at all.

Furthermore, even if this line can be established with any clarity, it does not offer the moral meaning that

its proponents would claim. The same techniques will be therapeutic or enhancing, depending on the

patient; doctors cannot realistically maintain this restriction with a level of rigor that proponents would

desire. Considering the previous section, this argument will assume germline intervention as the baseline;

an argument justifying germline enhancement will a fortiori justify somatic enhancement.

Different versions of the treatment/enhancement distinction hinge on their understandings of

health and disease. There is the descriptivist account, which examines normal human ability to

determine a sort of species baseline, and then conceives of disease in relation to that. There are two

varieties of this framework, differing in their conception of disease: the Normal Function framework and

what I will call the disease-centric framework. Then there is the deconstructive account, which regards

disease as a social construct which is reflective of social values. This second account is not typically

employed to challenge the propriety of genetic enhancement, so it will receive less attention here. 73

An understanding of enhancement that is grounded in what is normal may refer to what is

normal for either an individual or humanity overall.74 Defining normal as meaning the genetic

endowment with which an individual is born is simple enough, but it would be out of step with actual

medicine, which employs methods involving unnatural changes to an individual to improve health.75 This

70 Michael Sandel, The Case Against Perfection, THE ATLANTIC, (Apr. 2004)
https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/).
71 HUMAN GENOME EDITING, supra note 7, at 111.
72 Sandel, supra note 70.
73 For a general demonstration of this framework, see Ron Amundson, Against Normal Function, 31 STUD. IN HIST. PHIL.

BIOL. & BIOMED. SCI. 33 (2000) (challenging the scientific and ethical basis of Normal Function).
74 Human Genome Editing, supra note 7, at 105.
75 Sandel, supra, note 70

18
leaves a definition of normal that regards humanity as a group. While this may be superficially satisfying,

it only kicks the inquiry up a level. What does it mean to be normal in a group? It could mean average;

many human traits are quantifiable and thus can be subjected to large number statistical analysis. 76 But

that isnt true of actual genes. While metrics like height can be averaged, many phenotypes are not

quantifiable in the sense that one can determine the mean value. Whats an average eye color?

Furthermore, there is a difference between average phenotypes and average genotypes. It is not difficult

to calculate the average height of a group, but that simple metric is controlled by dozens of genes.77

Even if society determines a normal height or height range that one may be genetically edited to reach, is

that line even meaningful in the context of such a highly polygenic trait? There can be no average value

of the dozens of genes which account for something as simple as height. While many traits are simpler

than that, or even monogenic, height is a classic example of a trait that could be edited for the sake of

enhancement or therapy. 78 Due to the prevalence of bias against short people (heightism), an increase

in height can have an objectively desirable impact on ones life.79 This is true whether its correction

towards the mean or an increase to the top quintile, with the advantages that go with it.80 If the

therapy/enhancement line cannot help us determine a rule for height, it has questionable value as

principle.

Normal could instead mean common. However, a genetic arrangement that may be normal and

beneficial in some areas of the world may be unusual and harmful in others, such as in the case of sickle-

cell anemia and the resistance it confers to malaria.81 Even if there is a phenotype that everyone around

the world agrees to be desirable, it isnt clear which quantitative data should determine our norms.

76 Human Genome Editing, supra note 7, at 106.


77 Andrew Wood, et al. Defining the role of common variation in the genomic and biological architecture of adult human height, 46 NAT.
GENETICS 1173, 1179 (2014).
78 Norm Daniels, Normal Functioning and the Treatment- Enhancement Distinction, 9 CAMBRIDGE Q. OF HEALTHCARE ETHICS

309, 310 (2000) [hereinafter Normal Functioning].


79 Id.
80 E.g., Height and Earnings: The Role of Cognitive and Noncognitive Skills., 49 JOURNAL OF HUM. RESOURCES 141, 141 (2014)

(The positive association between height and social status is one of the most consistent findings in the social
sciences.).
81 Human Genome Editing, supra note 7, at 106.

19
Returning to the example of height, mean adult male height varies by about twelve inches between

countries.82 Should someone seeking to enhance their height be permitted to go no higher than the

average of their own country? That would excessive advantage over ones co-nationals, but it may be

antiquated considering the mobility of the modern world; furthermore, restricting people from

improving their lives based on where they are born does not seem very just. This is especially true

considering the apparent correlation between development and height, which would suggest that at least

this example would disproportionately impact the developing world.83

The average value for a phenotype could alternatively be calculated across the world, but that

would provide great assistance to those in shorter countries and very little assistance to those in taller

countries, while still leaving them with the negative impact of heightism. Beyond that, such a policy

would have to determine how common a genotype would have to be before it qualified as sufficiently

common to be a permissible genetic edit. Theres no obvious line here, no divine ratio that can tell us

what percentage of the population must naturally have a desirable gene before it is accessible to those

not fortunate enough to be born with it.

Some ethicists have argued that, even if the position of the line is uncertain, we can use quasi-

statistical concepts of normality to guide this rule.84 This language is borrowed from the work of

Norm Daniels, which uses this Normal Function framework to structure ethical discussions on a

variety of medical policy issues.85 Though Daniels is a proponent of the Normal Function framework to

distinguish therapy and enhancement, he has explicitly not endorsed it as the appropriate tool for solving

the issue of permissible genetic interventions.86 The argument employing the Normal Function

framework proceeds that, even if we cannot be certain of a true normal value, we can determine a range

82 Oliver Smith, Mapped: The worlds tallest (and shortest) countries, THE TELEGRAPH (Feb. 26, 2017, 8:00 AM)
http://www.telegraph.co.uk/travel/maps-and-graphics/the-tallest-and-shortest-countries-in-the-world/.
83 Angus Deaton, Height, health, and development, 104 PROCEEDINGS OF THE NATL. ACAD. OF SCI. OF THE U.S.A. 13232

(2007).
84 Patrick Lin and Fritz Allhoff, Against Unrestricted Human Enhancement, 18 J. OF EVOLUTION AND TECH. 35, 37 (2008)

(citing to Norm Daniels, 8 GROWTH: GENETICS & HORMONES 4648 (1992)).


85 E.g., Normal Functioning, supra note 78, at 309.
86 Id. at 319321.

20
of values that are our species-typical values and designate genetic edits that move someone from inside

that range to above it an enhancement. This accomplishes the general moral goals of prohibiting

enhancement and promoting therapy without foundering on relatively minor details.87 However, as

Professor Daniels himself states,88 this framework is much better suited to assessing the contours of

societys obligation to provide genetic interventions than it is to assess which treatments ought to be

prohibited. These notions of human norms are the foundation of Danielss concepts of health

distributive justice; everyone deserves a fair shot at life, and ensuring a baseline level of health is essential

to that.89 While therapy/enhancement is not a perfect guideline for what society should provide for

people, it is instructive as one of a set of rationales and provides a relatively coherent account of the line

between enhancement and therapy.90

We will return to this definition when we assess the moral strength of this framework. However,

its worth noting that the Normal Function model inherently runs into the issue of bootstrapping. Once

genetic treatments have significantly improved the lower end of the range of human abilities, there will

be a new bottom X% in whatever category is at issue, which will in turn raise the normal value. There

will always be a shortest height, and by raising the floor more and different people will now be on the

lower end of the spectrum. Furthermore, the top range is always shifting and we have no way of

knowing the actual top end of human potential even without genetic modification.91 Advances in

medicine as well as environmental factors can prompt all manner of increases in the normal range for

a human. Reducing childhood lead exposure has led to IQ improvements, which will raise the normal

intelligence range among humans; at some point individuals without lead exposure who are on the lower

87 Lin and Allhoff supra, note 84 at 37.


88 Normal Functioning, supra note 78, at 320.
89 Id. at 312318.
90 Id.
91 Eric T. Juengst, Can enhancement be distinguished from prevention in genetic medicine?, 22 THE J. OF MED. AND PHIL. 125, 131

(1997)[hereinafter Juengst, Can enhancement be distinguished?] (arguing that Danielss purportedly normative Normal
Function framework suffers from the same epistemological problems as explicitly positive health models: we cannot
know the true ceiling of human potential and so cannot know when the line from treatment to enhancement is being
crossed.).

21
range of normal will move out of that range and into sub-normality. Will they be eligible for genetic

treatments to raise their intelligence, assuming such intervention are predictably possible? Under the

normal function framework, as non-genetic factors become more favorable and raise human baselines,

more people will become eligible for more intensive genetic therapy, which will move us farther and

farther from our default genetics. The normal function version of the therapy/enhancement line will

gradually permit more intensive improvements over humanitys unmodified genome, which is an odd

consequence for a position seeking to restrict genetic enhancement.

Rather than define enhancement positively, some ethicists do so negatively, framing it as those

actions which do not fall under the umbrella of therapy. This is what I have termed the disease-centric

descriptive model. Perhaps the most notable advocate for this framework is Eric T. Juengst.92 Juengst

attempts to strengthen the Normal Function framework by refocusing it on the classical understanding

of disease as a distinct phenomenon, what he calls an ontological way of considering disease. 93 Instead

of drawing the enhancement/treatment line with regards to human ability baselines, Juengst anchors the

definition of treatment to those genetic interventions which address a disease, e.g., a biological process

that moves from discoverable causes (genes, germs, or environmental insults) through a ... pathogenesis

that yields characteristic signs and symptoms that, in turn, reduce function below species-typical

norms.94 Enhancements are those genetic interventions that cannot describe an adequately robust

story of the pathological process their improvement will defend against.95 Juengst conceptualizes his

position as a strengthening of the Normal Function argument, but by centering his position on the

nature of disease rather than baseline health he does more than that. This formulation, unlike the

original, can account for genetic interventions that mimic the effects of vaccines and other obvious

92 See generally, Juengst, Can enhancement be distinguished?, supra note 91.


93 Id. at 136 (in terms of building a solid basis of reliable empirical knowledge for medical science, it makes more sense
to take the observable constellations of complaints, physical signs, natural histories, pathogenic processes and etiologies
that constitute specific diseases as the primary data of medical science, since we are more confident about the reality of
those systems than we are about the nature of the physiological laws they are supposed to reflect.).
94 Id. at 138.
95 Id. at 137.

22
enhancements, which is a defect in the Normal Function framework as a tool of sorting categories of

medical intervention.96As Jeungst recognizes, a diseased-centered conception of bioethics and medicine

is itself highly controversial,97 but it may be the strongest form of the treatment/enhancement

distinction because it provides a clear test for individual cases. The same intervention can be a treatment

or an enhancement depending on the patient, such with steroids. By centering intent Jeungst permits

distinction between the two.

That strength is also a weakness though. By centering the conception of treatment on disease,

this model by Juengsts own account permits and justifies treating cases of like suffering and

disadvantage differently. 98 To revisit a classic Daniels exception: two boys are abnormally short and on

track to remain so into adulthood. 99 One boys condition is from cancer (caused by a mutation) that has

damaged his endocrine system so that it produces less HGH. The second boys condition is due to a

mutation that makes his body have fewer growth hormone receptors than average. The two boys are in

the same position, they will each be subject to disadvantage due to their heights and both conditions

were caused by genes, but only one of them merits genetic treatment or hormone treatment to correct

his height under the traditional understanding of disease. Daniels ultimate insight, drawing more than a

little from the deconstructive account of disease, is that if our classic conception of disease determines

that two people with the same factual problem (shortness) and the same general cause (bad genetics)

should be afforded unequal access to a treatment, then the classic conception of disease promoted by

Jeungst may be flawed.

We have identified the two strongest forms of the treatment/enhancement distinction. Each of

them has flaws identified by the others proponents. If nothing else, the fact that such a fundamental

disagreement exists between major figures in the medical ethics field about what is treatment and

96 Id. at 133 (both normal immunization and the new "genetic immunizations" are hard cases for the Normal Function
account. Susceptibility to infection by the polio virus is not a deviation from normal species typical functioning.).
97 Id. at 136137 (noting that Juengsts break from Daniels is reflective of centuries of dispute on the nature of

medicine).
98 Id. at 138.
99 Normal Functioning, supra note 78, at 311.

23
whether diseases exist as distinct metaphysical entities ought to give one pause on relying too heavily on

this distinction in formulating policy. Resolving a centuries long dispute over the meaning of health is far

beyond the scope of this issue and this paper. Laying that aside, there is a greater issue with both with

regards to genetic enhancement: neither provides a strong moral case against it. These accounts treat the

fact of disease as morally neutral (just a matter of physiological observation) and the act of treatment as

morally good. Treatments are morally good because they improve the ability of the sick to fully

participate in life, which serves important justice interests. 100 It does not follow from that point that

enhancements are bad. They may be neutral or they may be good. Some of them may be moral

imperatives.101 It could be argued that providing enhancements may raise the baseline in such a way that

more individuals would be subject to injustice by being at a disadvantage compared to the norm

(diseased in the Normal Framework). That argument, however, applies equally well to lead abatement,

which disproportionately helps those who would otherwise be exposed to lead. It may be that the social

consequences of genetic enhancement will in fact be greater inequality, but the improvement of one

person relative to another cannot, consistent with any sort of aim towards social progress, be an

impermissible manifestation of inequality.

The deconstructive account of health and disease does no better: if the entire meaning of disease

is arbitrary then grounding our policies in what does and does not address disease is illogical.102 Even

within the observed morality of this framework, in which disease is bad in as much as it reflects social

understandings of badness, there is no implication that enhancement is bad as well. The last several

pages of assessing these definitions only serve to help us distinguish what exactly is meant by this

distinction. When Sandel and others argue that we should not cross the enhancement line, we can

approximate what they mean.

100 Id. at 314.


101 Fritz Allhoff, Germ-Line Genetic Enhancement and Rawlsian Primary Goods, 18 JOURNAL OF EVOLUTION AND
TECHNOLOGY 10, 20 (2005) (if they are safe, certain genetic enhancements are Rawlsian Primary goods which we are
obligated to pass on to our descendants).
102 David Resnik, The Moral Significance of the Therapy- Enhancement Distinction in Human Genetics, 9 CAMBRIDGE QUARTERLY

OF HEALTHCARE ETHICS 365367 (2000).

24
There are a few classic objections to enhancement. The first one, which Sandel is a notable

proponent of, could be called the authenticity argument. If we use genetic enhancement (and other tools

of similar capability) to improve and create our own genetic endowment, we diminish the value of both

our achievements and our natural endowment.103 The achievement point is a little odd, because most

people are at least somewhat aware of their existence of their talents and the role that those play in their

accomplishments. The idea that enhancement could render accomplishments hollow makes some sense,

but it doesnt hold up to scrutiny. The athletes with world records probably know that their being the

best recorded at their endeavor is due in part to an accumulation of knowledge on how to diet, train, and

so on. The comparison to performance enhancing drugs is common in this subject, but hard to

formalize as a rule. Why is genetic enhancement more like taking a performance enhancing drug than it

is like having access to the greatest trainers and nutritionists in the world?104 Sandel and others of his ilk

would likely agree that meaningful accomplishment requires work and the application of humanitys

accumulated knowledge; we cannot triumph without changing ourselves. Ultimately what most people

find objectionable about PEDs is that they subvert the rules of a competition. Life is not the sort of

competition that has rigid external rules though. More broadly, almost every generation in human history

has had an easier time doing thing than their parents. I do not find my accomplishments meaningless just

because my home has amenities that would make a roman emperor envious; instead I just adjust my

goals and expectations in light of my capabilities. A prohibition on enhancement will have to make a

clearer argument about what is special about the gene, such that nutritional enhancements are

permissible but genetic enhancements are not.

Sandels other point about endowment is not much more persuasive. He claims that when we

take control of our genetics we revoke our sense of giftedness and it is that giftedness that forms an

underlying justification for redistribution. Maybe someone fresh out of gene therapy would believe

103 Sandel, supra note 70.


104 Allhoff, supra note 101, at 373.

25
themselves to be fully aware of and in control of their gifts. That wouldnt make it true though. Genetic

manifestation isnt that simple and its hard to believe it ever will be. In practice, a world that had gone

through everything it will take to develop precision gene enhancement will have an acute understanding

of what that does and does not mean. It doesnt seem plausible that learning so much more about how

complicated human capabilities are would make someone have a more simplistic view of the world. Also,

it isnt clear that our current situation drives people to contemplate the luck of their giftedness. LeBron

James probably knows he has a lot of talent and good genes, but that doesnt necessarily mean it informs

his morality. The Rawlsian notion of giftedness does not predominate moral dialog in this country,

implicitly or explicitly.

Sandel has a third argument that deserves more attention. He writes about the responsibility that

comes with the power to change ones DNA. If we have the power to change that then we may have an

obligation to. If we dont others will blame us for not doing so, either to make the most of ourselves or

those under our care. While enhancement may not be obligatory, declining will have social or economic

consequences.105 Sandel proposes an athlete whos chided for being too short and the metaphor could be

extended to a worker whos disadvantaged due to their lack of enhancement. Putting aside the fact that

genetic employment discrimination is illegal, it does raise a question about competitive pressures. There

is no denying that, to the degree the genetically enhanced are noticeably superior to the unenhanced,

there will probably be some pressure on the unenhanced to change. However, there is already a wide

range of skills and abilities in our society that result in productivity gaps and differing employment

experiences. If the basic employment levels in this country are similar in the enhanced future to their

current levels, by the time that a requirement for enhanced performance became widespread enough to

impact everyday people, enhancement would almost have to have become more affordable. If it is

affordable, and people chose to not pursue it, then there may ultimately be some consequences for their

employment prospects. This is true of any productivity implement from computer skills to higher

105 Sandel, supra note 70.

26
education. Employers have preferences for workers who live nearby, who dont have other large time

commitments, and who have pursued degrees that are sometimes only tangentially related to the actual

work. All are major lifestyle points, but only one of them is an illegal mode of discrimination that many

find morally offensive. This is undoubtedly a much more concrete and plausible consequence than his

others, but its important to remember that a better response to known unjust tendencies is to respond

to those tendencies, rather than to discard anything that may exacerbate them, no matter the benefit it

requires.

This paper is concerned not just with ethics, but with policy. In assessing the

treatment/enhancement divide, a major concern is how well it can work as an actual safeguard against

the concerns of its critics. If we accept that we can only use GGE for therapy, what will happen? It will

make little difference in which techniques are developed. Steroids can be used to treat or to enhance, and

the ED drug industry got started as cardiac medication, but now those prescribing those drugs is its own

cottage industry. Meanwhile, its hard to think of a single medical technique that has no therapeutic

value, aside from perhaps some niche cosmetic surgeries that are never used reconstructively. Some

critics of genetic enhancement claim we can prevent the development of enhancement by restricting

research authorizations to therapeutic techniques.106 Monogenic disease therapies would be amenable to

this rule, but almost nothing else. Genetics is an important role in disease development, but not a

dominant role;107 many healthy people will still have weaker genes and thus able to be enhanced by

therapeutic treatments.

We may restrict the usage of enhancements to treating disease (using whatever definition we

settle on), but even that is not so simple. Nosological elasticity is a very real phenomenon; definitions of

106 Lin and Allhoff supra, note 84 at 37.


107 E.g., Will D. King et al., The contribution of lifestyle, environment, genetics and chance to cancer risk in individuals and populations,
76 PREVENTATIVE MED. 132, 133 (2015) (The causes of cancer are complex and elusive research supports that there
is likely a combination of genetics, lifestyle, environment and random error in cell replication and control that influences
an individual's cancer risk.); Rudolf Uher, The Changing Understanding of the Genetic and Environmental Causes of Mental Illness,
58 THE CANADIAN J. OF PSYCHIATRY 67, 68 (2013) (explaining that specific genes are associated with mental illness but
typically require activation from environmental stimuli).

27
diseases change and not always for purely medical reasons.108 As the suite of changes medicine can offer

humans expands, the urge to classify more and more difficulties of life as medical expands as well. 109 As

cultural norms change or different cultures collide, this becomes even more pronounced.110 This has

problematic consequences well outside this conversation, but its enough to say that on top of whatever

strain genetic enhancement might impose on the notion of disease, it is already a highly dynamic and

social concept. The pressure to realign therapeutic orientation comes from patients as well as doctors.

Cognitive enhancement offers a groundbreaking alternative to the pain of Alzheimers disease. It also

offers an opportunity to help millions of aging but cognitively normal adults the chance to retain what

many humans consider the most essential faculties as the reach the end of their lives.111 Patients will ask

their doctors about genetic treatments and it is hard to see how well doctors will say no.

Our current medical system is built on the idea of trusting clinicians to prescribe drugs offlabel,

using their best judgments; we trust that doctors will make good decisions for their patients in exercising

this power. However, if treatment/enhancement is a firm line that cant be crossed, then we will need to

rework how these therapies are controlled. Genetic treatments as safe as the ones this paper imagines

would be as safe or safer than contemporary pharmaceuticals; our current ethical regime would likely

stop non-therapeutic gene treatments about as well as it stops non-therapeutic prescription

enhancements. One aggravating factor is that the fear of recreational usage that currently tempers the

urge to prescribe some pharmaceuticals would likely not be as prominent in the genetic context, letting

doctors feel freer to address their patients needs. Alternatively, if we want to impose new restrictions to

ensure that enhancement is not prescribed, then that will either require a massive change in how

medicine is practiced or make it exceedingly difficult for doctors to use the latest technology to heal their

108 Erik Parens, On Good and Bad Forms of Medicalization, 27 BIOETHICS 28, 30.
109 Id. at 3132.
110 Laurence J. Kirmayer & Duncan Pedersen, Toward a new architecture for global mental health, 51 TRANSCULTURAL

PSYCHIATRY 759, 765 (2005) (discussing the problems of medicalization in light of cultural differences).
111 Peter J. Whitehouse et al., Enhancing Cognition in the Intellectually Intact, 37 THE HASTINGS CTR. REP. 14, 22 (1997).

28
patients. Monitoring compliance with the disease/treatment rule will be burdensome and highly

disruptive to medicine.

A final question about an enhancement prohibition is what to do if someone violates it? Doctors

can be disbarred or even imprisoned if thats how harshly society wants to punish them, but what do we

do with patients who violate these rules? If someone gets drugs that they shouldnt the drugs can be

taken away. If someone gets genes that they shouldnt, its not clear what would be an appropriate

response. In theory, theres nothing to say that an enhanced person couldnt be de-enhanced with the

same techniques. That said, criminalizing someones (new) genetic code and forcibly changing it back is

an uncomfortable thought. First, punitive medical techniques shock the modern conscience. Corporal

punishment hasnt been practiced regularly in our society for a long time. A second, related issue, is that

the trend in our criminal justice system is towards a narrow range of all-encompassing sanctions: fines,

imprisonment, or non-imprisonment liberty sanctions. Creating this new category of punishment tailored

to one crime would be an odd deviation from that trend. Furthermore, it would raise the specter of other

penal implementations of genetic intervention. If we can punish people for getting a prohibited medical

procedure by changing their genes to be more normal, why would it be unethical to punish a violent

criminal by adjusting their genes that are associated with aggression. On the other hand, perhaps we

would use traditional punishments on the infringers we managed to catch. It wouldnt reverse the

damage but it would deter. A third option would be to only punish the practitioner. However, that would

create the possibility of genetic tourism, where one need only travel to a permissive country to get a

treatment and can then return to exert the corrupting influence of genetic enhancement on your home

country. The point is, if we are going to enact a prohibition on human enhancement, we need to know

how were going to enforce it.

Ultimately, the therapy/enhancement line is a very difficult one to draw and an even harder one

to enforce. Restricting genetic interventions on this line in any effective manner would require serious re-

evaluations of the role of doctors in the United States. Instead, we should leave it to doctors ethical

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judgments as to their patients best interests, subject to the same restrictions we currently have for

controlled substances.

Conclusion

Genetic engineering is not a panacea. It will require extensive research to be done with any sort

of efficacy and will require a nuanced understanding of epigenetic factors to reliably produce desirable

results. Genetics can only take us so far. Without synergistic environmental factors, genetic traits are

distorted or counterbalanced to a large degree. However, these limitations make genetic enhancement

more appealing in some ways. The simplest genetic alterations the eradication of diseases like Cystic

Fibrosis. These are also the most uncontroversial ones. Fears of super humans are understandable, but

misplaced because the sort of alterations that would be necessary to seriously move the needle on

broader mental or physical capacity are the most complicated and least plausible enhancements. These

factors have complex etiologies, and it is far too easy to get caught up in genetic determinism when

assessing these risks.

That we should discard the limits discussed here does not mean there should be no limits. First

and foremost, US law against genetic discrimination must be maintained and expanded. This is not

because genetic enhancement poses this threat, but because the same technical advances that have given

us the option of enhancement have also made this new and insidious form of oppression possible. As

mentioned above, sexual discrimination against zygotes poses a special social threat that should be

guarded against. Further, parental decisions on a childs genetic intervention should be subject to the

same scrutiny as any other decision, if not more. Finally, while doctors cannot give us the sort of firm

definitions to build prohibition around, they have a vital role in ethically helping their patients determine

whether genetic intervention is right for them. As we learn more about the true potential of genetic

science we may have to revisit some of the conclusions here, but for now the form a basis for boldly

pursuing the best version of our species.

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