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Designing Genetic Engineering Technologies For Human Values

  • Institute of Ethics and Emerging Technologies


Genetic engineering technologies are a subclass of the biotechnology family, and are concerned with the use of laboratory-based technologies to intervene with a given organism at the genetic level, i.e., the level of its DNA. This class of technologies could feasibly be used to treat diseases and disabilities, create disease-resistant crops, or even be used to enhance humans to make them more resistant to certain environmental conditions. However, both therapeutic and enhancement applications of genetic engineering raise serious ethical concerns. This paper examines various objections to genetic engineering (as applied to humans) which have been raised in the literature, and presents a new way to frame these issues, and to look for solutions. Specifically, this paper frames genetic engineering technologies within the ‘design turn in applied ethics’ lens and thus situates these technologies as covarying with societal forces. The value sensitive design (VSD) approach to technology design is then appropriated as the conceptual framework in which genetic engineering technologies can be considered so that they can be designed for important human values. By doing so, this paper brings further nuance to the scholarship on genetic engineering technologies by discussing the sociotechnicity of genetic engineering systems rather than framing them as value-neutral tools that either support or constrain values based on how they are used.
Etica & Politica / Ethics & Politics
, XXIV, 2022, 2, pp. 481-510
ISSN: 1825-5167
Department of Values, Technology & Innovation
Delft University of Technology
Genetic engineering technologies are a subclass of the biotechnology family, and are concerned with
the use of laboratory-based technologies to intervene with a given organism at the genetic level, i.e.,
the level of its DNA. This class of technologies could feasibly be used to treat diseases and disabilities,
create disease-resistant crops, or even be used to enhance humans to make them more resistant to
certain environmental conditions. However, both therapeutic and enhancement applications of
genetic engineering raise serious ethical concerns. This paper examines various objections to genetic
engineering (as applied to humans) which have been raised in the literature, and presents a new way
to frame these issues, and to look for solutions. Specifically, this paper frames genetic engineering
technologies within the ‘design turn in applied ethics’ lens and thus situates these technologies as co -
varying with societal forces. The value sensitive design (VSD) approach to technology design is then
appropriated as the conceptual framework in which genetic engineering technologies can be
considered so that they can be designed
important human values. By doing so, this paper brings
further nuance to the scholarship on genetic engineering technologies by discussing the
sociotechnicity of genetic engineering systems rather than framing them as value-neutral tools that
either support or constrain values based on how they are used.
Genetic engineering, genetic modification, value sensitive design, VSD, bioethics, applied ethics,
Biotechnology is a family of technologies
that includes various things such as genetic
engineering, biohybrids, bionics and exoskeletons, and bio-inspired materials (e.g.,
technology family
is a collection of technologies that share (techniques that have) common goals,
domains, or formal or functional features. This definition was developed by the TechEthos project team
based on the definition of technology (see TechEthos, 2022; see also Umbrello et al., 2022).
smart biomaterials), among others (see Porcari et al., 2022). Due to its potential to
create products of considerable market value, genetic engineering (also referred to as
genetic modification) has garnered significant interest in both the scientific and
industrial biotechnology communities (Loganathan et al., 2009). Genetic engineering
refers to the use of laboratory-based technologies to intervene with organisms at the
genetic level, i.e., the level of DNA, in order to force those organisms to either express
or suppress some non-native trait(s). Genetically modified organisms (GMOs), often
in the form of agricultural products (i.e., crops), are an ubiquitous example of how the
application of genetic engineering can lead to highly efficacious and profitable
commercial products. However, the mixed views of genetically modified crops and the
growing discourse regarding their (potential) health effects, sustainability, and
intellectual property concerns highlights the many issues attending potential genetic
engineering efforts (Desquilbet and Bullock, 2009; De Vendômois et al., 2010; Nelson,
Genetic engineering may be most prevalent in agro-business domains, but it is not
limited to these areas of research. In fact, such techniques have been applied to humans
as well generally with much debate mostly with the goal of ameliorating diseases
and other debilitating pathologies like cystic fibrosis lung disease (Oakland et al., 2012),
for immunotherapy in treating various forms of cancer (Tüting et al., 1997), and for
treating autoimmune and inflammatory diseases (Ewart et al., 2019). Such applications
are generally taken to be less controversial.
However, there are more speculative and
likewise more controversial potential applications of genetic engineering; rather than
limiting the technology to purely therapeutic applications, there is the potential for
genetic engineering to be used to enhance or augment humans in a variety of ways,
such as by granting us greater strength (Bess, 2016), resistance to radiation
2020), or even to modify our ability to make moral decisions (i.e., moral
bioenhancement) (Specker et al., 2014). The last two decades of bioethical debate have
been dedicated to the many moral issues concerning the permissibility of using these
technologies to not only treat, but improve the human condition, raising questions
related to citizenship, naturalness, justice, genetic integrity, and other philosophical
issues unique to these novel and transformative technologies (Sorgner, 2016).
This paper takes a different approach for examining the ethical issues related to
genetic engineering technologies. Rather than framing the technologies as value-neutral
There are, however, also examples of controversial applications of genetic engineering for such
seemingly benign efforts, such as the work of He Jiankui, the Chinese scientist who genetically engineered
babies to genetically protect them against HIV (Krimsky, 2019).
Balistreri and Umbrello (2022a) argue that genetic modification interventions could be used to safely
and effectively modify the genetic patronage of astronauts whose mission is to colonize other planets in
order to make them not only survive, but thrive in high radiation and low/zero gravity environments.
Designing genetic engineering technologies for human values
instruments that, via their use, support or constrain certain values, I contend that the
way the technologies themselves are designed embodies values, values that change over
time and exist in covariance with societal forces. As such, these technologies form part
of a sociotechnical infrastructure with ubiquitous and pervasive effects that change over
time. What open options are available to future designers and users is contingent on
design histories
which open up or close down certain available choices to future
generations. In order to do this, this paper appropriates the value sensitive design
(VSD) approach to technology design as a principled approach to technology design
that acknowledges the interactional nature of technology and society as an inextricable
characteristic of understanding technologies. By doing so, I show how the proper
design of genetic engineering technologies via VSD can be oriented in such a way as to
support important human values while constraining those that are unwanted, ultimately
leaving open the possibility for future generations to update these technologies and
retool them to the changing needs and values of those future generations.
In order to do this, the paper begins by exploring the conceptual elements of genetic
engineering applications for humans, demonstrating the pervasive sociotechnical
characteristics of this technology. I then explore some of the fundamental
developments made in genetic engineering and the ethical issues raised by these. In
particular, emphasis is given to the need to innovate these technologies in a resp onsible
way given their pervasive and multi-generational impacts. This is followed by an
explication of the VSD approach and how it functions. In discussing the VSD approach
as applied to genetic engineering, special care is given to highlight how this
methodology can be leveraged to meet the particular ethical challenges of genetic
engineering, in order to arrive at an ultimate design that is sensitive to core human
values. The final section discusses some of the outstanding issues still to be addressed
as well as avenues for potentially fruitful future research.
The field of genetic engineering began to see its coalescence in the 1970’s as a
consequence of Berg et alia’s work in the creation of recombinant DNA molecules
(Berg et al., 1974). These techniques were primarily geared toward medical
applications and involved the splicing of a gene in order to get a useful protein that
could then be cultured in production cells, ultimately in order to produce those
proteins at scale (Morrow, 1979; Wright, 1986; Bloom et al., 1996). These early
successes in mass-producing useful proteins were profitable since the more traditional
sources of these proteins (i.e., human cadavers and animal organs) were costly and less
bountiful. Today, genetic engineering techniques focus less on the production of useful
proteins and more on understanding the source causes of diseases that can be
selectively and precisely targeted in order to ameliorate the resulting conditions. Rather
than provide the subject with engineered proteins they may be lacking, novel
techniques involve the therapeutic use of proteins to stimulate the body’s own ability to
produce that which it is missing (Mulligan, 1993; Verma et al., 2000; Wirth et al., 2013).
As genetic engineering has developed, it has grown rich interconnections with a
variety of other biotechnologies. Moreover, each particular subdiscipline within the
larger umbrella of “biotechnology” is apt to bring its own set of unique problems,
technical and moral. As such, it will be useful to have a definition of genetic engineering
which is wide enough such that it covers all areas of ethical investigation in question,
but which is also circumscribed enough to box out questions related to other
For our purposes, we can distinguish between (at least) three perspectives that can
be used to rarefy our working definition of genetic engineering, and that will be useful
for ensuring that we tackle the unique ethical issues associated with it in a principled
1. Genetic engineering techniques share specific properties and tools that set
them apart from other technologies. In particular, genetic engineering works
on the scale of cells in order to modify them or derive from them useful
products (Nicholl, 2008).
2. Genetic engineering provides a process in which relatively difficult biological
materials can be developed at scale and a means by which scalable new
organisms can be created (Bothast et al., 1999; Collins and Young, 2018).
3. Genetic engineering is convergent and enabling in nature; it intersects and
integrates existing domains like computing and human information [i.e.,
bioinformatics] as well as nanotechnology [i.e., nanopharmacy] (Tripathi,
2000; Timmermans et al., 2011).
Genetic engineering, an important and transformative biotechnology, includes the
research and development of novel and useful products at scale. This, of course,
implicates the discipline in not just the manufacture and production of such products,
but also their management. This more generalized conception of genetic engineering
allows us to evaluate its potential repercussions across various domains. As we
mentioned, genetic engineering has applications beyond its more intuitive uses in
medicine, such as in industrial processes and agriculture. In this section, we explore
Designing genetic engineering technologies for human values
how more speculative applications and developments of genetic engineering
techniques as applied to humans implicate a host of both social and ethical concerns
that merit addressing. This is followed by a discussion of how many of the ethical issues
concerning genetic engineering are unique to this domain and therefore merit specific
consideration, especially when evaluating the most promising ways to design such
convergent and transformative technologies so that they will support human values.
What sets genetic engineering apart from the study of ‘genetics’ and ‘engineeringis
that it is particularly oriented at production via the use of biology at the cellular level.
As mentioned above, traditional sources of the now mostly engineered spliced proteins
came from sources which were not readily available, making their scalability, and thus
ubiquitous adoption and application, strictly limited. Genetic engineering presented a
way past this limitation. Genetic engineering, by its very nature, however, is a process
that uses laboratory-based technologies to alter the DNA makeup of an organism. This
may involve changing a single base pair (A-T or C-G), deleting a region of DNA or
adding a new segment of DNA.(Smith, 2022). As such, the technology and its
applications provide a novel locus for harm to emerge from, in addition to other
associated unique ethical issues. Below, we explore some of the main developments
and ethical issues of genetic engineering as it relates to human medicine as well as less
therapeutic and more enhancement-oriented applications of genetic engineering.
Genetic engineering technologies have and will foreseeably continue to provide
numerous boons to how medicine is practiced, presenting new ways to ameliorate
various pathologies. As mentioned, there are several extant applications of such
technologies towards therapeutic ends, that is, towards ameliorating illnesses in
humans, such as for the regeneration and repair of tissues using mesenchymal stem
for the treatment of cardiovascular injuries, various forms of cancer, kidney
failure, and several neurological and bone disorders, as well as polyglucosan body
disease (Hodgkinson et al., 2010; Raben et al., 2001).
The ability of genetic engineering technologies to target the
of pathologies at
the level of DNA positions these technologies as the future of medicine. This is likewise
furthered by genetic engineering’s convergent character with other biotechnologies;
I.e., multipotent stem cells found in bone marrow (see Minguell et al., 2001).
genetic engineering presents new ways to approach illness while other biotechnologies
like nanotechnology provide novel vehicles for delivery of treatments, genetic
engineering treatments included. For example, in the transplantation of genetically
engineered stem cells in order to stimulate vascularization and angiogenesis,
biodegradable polymeric nanoparticles are used as the delivery mechanism in order to
avoid complications arising from traditional delivery mechanisms (Yang et al., 2010).
The ability of nanotechnology to enhance the delivery of therapies where traditional
drugs and treatments fail is primarily due to the minute scale of nanoparticles and their
ability to more precisely target illness loci by passing through cell walls and the blood-
brain barrier more efficiently, thus increasing the delivered drug’s bioavailability, and
this couples in a clear way with the treatments made possible through genetic
engineering (Bawa et al., 2008; Bennett-Woods, 2008; Ebbesen and Jensen, 2006;
Iravani and Varma, 2019).
There are at least two sources of safety issues concerning genetic engineering. The
first is due to its convergent nature, primarily with that of nanotechnology. The ability
for genetically engineered therapies to be delivered via nano-particles means that the
body may be subjected to comprehensively invasive treatments down to the lowest level
(i.e., intra-cellular), thus exposing patients to much greater risks of toxicity as compared
to that of traditional pharmaceuticals. The resulting effects of such toxicity would be
exacerbated by this increased bioavailability (Bennet-Woods, 2008; Jain et al., 2015).
This is not only true of obviously toxic materials, but studies have shown how relatively
non-toxic materials, like silver (Ag), when delivered at the nanoscale, display high levels
of toxicity (Hadrup and Lam, 2014). Iravani and Varna (2019), however, argue that
despite the therapeutic advantages of nanoparticle engineering for medicine, genetic
engineering poses a potential solution to the toxicity issues, given that the biosynthesis
of nanomaterials and nanoparticles, even on the industrial scale, provides overall
greater resistance to metal toxicity.
Still, there are potential safety issues with the products of genetic engineering,
independent of nanomedicine, and that is the potential to stimulate graft-versus-host
disease [GVHD] (Ferrara et al., 2009), which is a potentially fatal condition that can be
spurred by allogeneic stem cell transplantation, a genetic engineering procedure often
used in therapeutic applications for treatments of certain lymphomas (Hirayama et al.,
2019; Maude et al., 2018). There have been approaches to gene-engineered adoptive
T cell therapies that minimize the risk of GVHD (see O’Leary et al., 2019; Bouchkouj
et al., 2019), but these are time-consuming, thereby risking further aggravation of a
patient’s condition (Schuster et al., 2019), and such therapies are also subject to
Designing genetic engineering technologies for human values
production errors themselves (Locke et al., 2019). Ellis et alia (2021) argue that the
source of the problem may also contain the seeds of a solution, maintaining that a
balance has to be struck between further genetically modifying third-party T cells to
avoid GVHD while ensuring that such T cells are procured from a safe source such as
matching donors (Kochenderfer et al., 2013) or umbilical cord blood (Eapen et al.,
2010; Kwoczek et al., 2017).
Overall, a cautious conclusion is that further research needs to be conducted to look
at how genetically engineered therapies like those of modified T cells may be put to
use without engendering new risks at the same time. Although promising techniques
for doing this are being looked into (i.e., Anzalone et al., 2019), what is required is an
explicit safe-by-design orientation in order to balance the tension between efficacy and
safety (Ellis et al., 2021).
Due to the novel and convergent aspects of genetic engineering, informed consent
presents a particularly thorny issue, even for purely therapeutic technologies (and
obviously for enhancement-oriented technologies as well). The principle of informed
consent refers to:
the process by which a patient and medical provider discuss a proposed medical
treatment, its anticipated consequences, potential risks and benefits, and
alternatives. This process allows for open discussion between the provider and
the patient and may theoretically help reduce medical errors, improve patient
outcomes, and increase patient empowerment (Cordasco, 2013).
However, given the complexities of genetic engineering, its aptness to be utilized in
convergence with other novel (and sometimes risky) biotechnologies, and the
uncertainties attending many new treatments, there are epistemic gaps (or at least
hurdles) that may preclude patients from fully grasping what is being proposed,
meaning they cannot be sufficiently informed of the risks, particularly given the
unforeseen risks that might emerge or the risks that are completely unforeseeable given
the convergence of genetic engineering technologies with other risky technologies. Such
practical limitations to informed consent are only exacerbated when discussing genetic
testing (Poste, 1999).
Though much of the work in genetic engineering has been oriented toward treating
and possibly even eliminating illnesses or diseases, recent developments have
demonstrated the potentiality for the technology to be put to use for human
enhancement as well. For example, in 2018, Chinese researcher He Jiankui and fellow
collaborators deceived doctors, leading them to implant gene-edited embryos into two
women, a clear violation of medical ethics (Normile, 2019). Jiankui’s goal was to create
children born with an inherent resistance to HIV.
Although such instances of human genetic engineering for enhancement purposes
are rare, they betray the feasibility of using such techniques to enhance humans, rather
than just treat them for existing conditions. In fact, there is a host of philosophical
literature that explores the ethical issues which emerge as a consequence of such
technologies geared towards enhancement purposes, with some scholars arguing
against their ethical permissibility (Lin and Allhoff, 2008; Giubilini and Sanyal, 2016)
and others arguing that such technologies, when safe and available, are not only
permissible, but even obligatory (Agar, 2008; Harris, 2009; de Melo-Martín, 2010).
The debate on the feasibility, permissibility, and even obligation to employ genetic
engineering towards human enhancement ends forms a rich and vast literature, and
exploring this debate falls beyond the scope of this paper. However, we will discuss
some of the issues which relate to values unique to genetic engineering (rather than
values that are common to most technologies; i.e., safety, efficacy, usability, etc.). In
particular, we will explore some of the more and less feasible/plausible values as they
emerge, although perhaps not explicitly so, within the literature. Those that will be
discussed are summed up in Table 1.
Less Acceptable/Plausible
More Acceptable/Plausible
Right to unmodified genetic code
Right to an 'open future'
Right to a unique genetic code
Right to a life worth living / reasonable
probability to have a good life
Respect for disability as a mere
Principle of justice
Table 1. Less and more acceptable/plausible values concerning genetic engineering
We can identify at least three less acceptable or less plausible values that are
implicated by genetic engineering technologies (see Table 1):
- Right to unmodified genetic code;
Designing genetic engineering technologies for human values
- Right to a unique genetic code;
- Respect for disability as a mere difference
Some have argued that the preservation of the human genome is a common good
rather than something which may permissibly be dictated at the will of individuals (c.f.,
Ossorio, 2017). In fact, the UNESCO International Bioethics Committee’s resolution
on the ethics of cloning demands the preservation of the human genome, given that it
is the “common heritage of humanity” (UNESCO, 1997, Art. 1). However, those who
maintain positions like the ‘right to an unmodified genetic codeor the ‘right to a unique
genetic code’ leave themselves open to serious philosophical scrutiny (see de Andrade,
2010; Buttigieg, 2012; Primc, 2020). For example, as Balistreri and Umbrello (2022a)
put it:
every time we have a child, we modify the genetic heritage of humanity, given that
through sexual reproduction (or assisted reproduction interventions), we bring into the
world individuals who have a genealogy different from that of their parents, or, in any
case, of the people who contributed to the birth via their germ cells. (Balistreri and
Umbrello, 2022a, p. 2)
This means that each birth, whether as a result of sexual reproduction or assisted
reproductive techniques,
de facto
modifies this so-called “common heritage”.
Not only
this, but it is this changing genome
as a consequence of each birth
which provides the
unique genetic material necessary for variation and thus general human fecundity,
thereby enabling the sustainability of the human species (Harris, 2014, p. 57). This is
not only the case with current means of reproduction (sexual or assisted) but even with
less-than-efficacious technologies like cloning. One would think that it is always the case
that cloned individuals will be identical genetic copies of their genetic donor. However,
this is only the case if they are the recipients of the mitochondrial and nuclear DNA
from the same individual (Devolder and Gyngell, 2017; Levy and Lotz, 2005; Harris,
2004). If the cloned individual does not receive the mitochondrial and nuclear DNA
from the same individual, then their genetic heritage will consequentially be different
from both donors. However, if we did indeed aim to preserve the human genome as
genetic, then this would mean that we could produce cloned females. Why? Only
females can receive the genetic heritage, i.e., both mitochondrial and nuclear DNA,
from an identical person. This would mean that in order to truly preserve the common
genetic heritage of humanity, we would necessarily condemn the male sex to extinction,
something that is arguably not ideal. Hence, these arguments against the use of genetic
There also appears to be this tension within the UNESCO (1997) document itself, where Article
1 expresses this common heritage and its preservation, whereas Article 3 expresses the mutation and
changing nature of said genome as a consequence of various factors.
engineering technologies presuppose that unmodified or unique genetic codes have
some special status that is worth preserving, even at such costs. However, the former is
ipso facto
a consequence of any form of reproduction, whereas the latter is
de facto
natural consequence of any genetic modification.
But what about ‘respect for disability as a mere difference’? A more radical argument
proposed by scholars such as Elizabeth Barnes and Rosemarie Garland-Thomson is
that disability is
a difference, it is not a disadvantage. As such, like the many other
differences that distinguish one person from the next, there does not nor
should not
be a need to modify the genetic patrimony of the offspring in order to “correct” some
condition thought to constitute a disability because, under this view, that condition is
not a pathology (Barnes, 2009; 2016a). The position is radical given that it
fundamentally argues that whatever the condition a child is born with is not only
acceptable but good (c.f., Garland-Thompson, 2012; 2020). They thus defend the
conservation of difference and disability, arguing against genetic engineering
technologies that could potentially be ameliorative, basing this position on their
premise that disability is not something to ameliorate. In fact, their argument rests on
the notion that it would be a form of discrimination to consider disability as a form of
pathology. However, as Kahane and Savulescu (2016) correctly point out, if such
disabilities are mere differences and not only acceptable but good, then it would be
likewise good and perhaps obligatory to preserve those differences, despite genetic
engineering methodologies to change such differences (or remove them entirely) in
further offspring, i.e., genetically propagating those biomarkers (c.f., Barnes, 2016b).
The preservation of such ‘mere’ differences such as disabilities when there are means
(i.e., genetic engineering) to avoid or ameliorate such conditions is hardly a sustainable
position, particularly so when such a line of argumentation also leads to conclusions
where such ‘mere’ differences must be conserved, i.c., propogated.
There are at least three more plausible values that can be sustained concerning
genetic engineering, and those are:
- Right to an 'open future'
- Right to a life worth living / reasonable probability to have a good life
- Principle of justice
Arguments sustaining these three values are more thoroughly explored in Balistreri
(2022) and Balistreri and Umbrello (2022a; 2022b). However, we will briefly outline
them here.
Designing genetic engineering technologies for human values
Balistreri and Umbrello (2022a; 2022b) use the context of future space travel and
colonization as a narrative instrument to argue for the moral acceptability of genetic
engineering interventions. These arguments, however, can be more broadly
Genetic engineering interventions in humans can be targeted toward either the
somatic line or germline. The difference between the two is that somatic line
interventions can be practiced on a healthy and consenting adult; however, these types
of somatic line interventions cannot be transmitted to offspring. This is because the
somatic line modifications impact the individual’s cells and not the oocytes and/or
spermatozoa. For this reason, and to not risk exposing potential offspring to harsh
conditions in the case of extra-terrestrial spaceflight and colonization, it makes more
sense to engage in germline interventions on embryos or gametes prior to fertilization
so that the offspring are born with the enhancements already. This can be practiced
prior to take-off (i.e., on Earth) and would naturally take place prior to birth and,
therefore, without the consent of those whom such interventions will affect. Still, such
does not entail that such decisions are not morally justifiable (Harris, 2017).
In fact, it is exactly because such offspring are not capable of making autonomous
choices that progenitors have the right as well as the moral responsibility to make
choices in their place (c.f., Scanlon, 2000). What is of moral relevance is that the
choices promote, as much as possible, not only the well-being but the potential for
future flourishing of said offspring.
In the case of space travel and colonization, adult
astronauts are free to make sacrifices and choose to undertake genetic engineering
interventions to make them capable of surviving space (i.e., functionally therapeutic
interventions). However, a minimally sufficient life worth living, vis-a-vis genetic
engineering of offspring, is hardly a sacrifice that should be imposed on future offspring
that would be required for long-term mission sustainability. To this end, it would be
morally obligatory, when safe and efficacious, to employ genetic engineering
technologies, as well as other converging technologies, to ensure that offspring not only
meet the minimum threshold for wellbeing but that they will have a good potential for
having a good and flourishing life (i.e., functional enhancement applications of genetic
engineering). What this entails is a moral obligation to employ genetic engineering
technologies in a context where a therapeutic application is only a minimally necessary
More simply put, the important point here is that there exists a presumed consent; that is, if
progenitors could have obtained the consent of said offspring to undertake such interventions that
they would have done so.
condition but not a sufficient one in order to qualify for moral acceptability. Rather, a
value placed on using such technologies on future generations to amplify and empower
their potential available choices is necessary, and, as a consequence, making
a priori
genetic engineering choices oriented towards providing future generations with good
lives, not only those that meet the minimum threshold for survival, is likewise
Concerning justice, the clearest way of interpreting justice (which is different across
the literature regarding the specific technology in question, c.f., see Floridi et al., 2018;
Umbrello, 2020a; Friedman and Hendry, 2019), is to view justice as fairness (à la
Rawls). However, as conceptualized within the domain of genetic engineering, it could
more properly be understood as freedom from genetic inequality (Simmons, 2008).
This can be understood in a number of ways. Given the efficacy of genetic engineering
techniques for anticipatory diagnoses, particularly for genetic conditions, there are
ethical issues that emerge in the use of genetic testing to uncover untreatable illnesses,
particularly those that may emerge in late adult life. This can lead to undue anxiety and
stress in potential positive diagnoses despite a lack of treatment (Marteau et al., 1992;
Woolridge and Murray, 1988). However, beyond the therapeutic domain, there is the
issue of gene doping, or enhancement applications of genetic engineering, often in
sporting domains where genetically driven increases in muscle mass and density
presents a clear advantage (Cantelmo et al., 2020). Although research is being
undertaken in order to test for such genetic interventions, it remains difficult to identify
such genetic enhancements in athletes (Baoutina et al., 2008). Such enhancements
would confer to their hosts unfair and potentially undetectable advantages that would
otherwise be prohibited if identifiable. Beyond these two issues of inequality are also
the discussions surrounding designer babies (Balistreri, 2022). This is often construed
as a function of trait selection by their progenitors in an attempt to confer to their
offspring potentially desirable traits (height, skin/eye colour, increased learning
memory, etc). Functionally, the fear surrounds a certain form of eugenics that could
arise if preimplantation genetic diagnosis techniques are perfected and able to be
geared toward non-disease traits (King, 1999; Robertson, 2005; Appel, 2012). This
latter application could be used to promote a certain vision of ideal race, propagating
certain notions of beauty, all the while exacerbating existing inequality in access to the
For a more in-depth critique against the principle of the minimum threshold of well-being
concerning genetic engineering, see Balistreri and Umbrello (2022a).
Designing genetic engineering technologies for human values
techniques conferring such traits, given their relative costs and elective nature (Veit,
So far we have examined how genetic engineering, both for therapeutic and
enhancement purposes, raises a variety of ethical issues. In the philosophical debates
on this, it is generally the practice to focus primarily on the consequences of using
genetic engineering technologies and the ethical issues that emerge. However, this
approach fails to grapple with all that goes into a particular technology, in particular the
design histories, design architectures, and series of choices made by all those who are
involved in the design process that leads to some technology. In many ways, this
approach to technology is mostly instrumental, in that it understands technology as
value-neutral and, instead, sees value come in only as a function of how a technology is
used [i.e.,
] (Feenberg, 2009). However, this is only one way in which
we might consider technology. Aside from
there is also
, which defends the notion that society is determined by the inextricable
advance of technology (Dafoe, 2015; Wyatt, 2008). On the other end, there is
, which argues that technology is best understood as socially constructed
and thus determined by social forces (Pinch and Bijker, 1984; Klein and Kleinman,
2002). Following the influence of the work of Langdon Winner (1980) and the
subsequent ‘design turn in applied ethics’ (van den Hoven, 2017), the philosophy of
technology has since acknowledged that technology is best understood as interactional
interactional stance
). This position holds that technology and society co-construct and
co-vary with one another, exerting pressures and forces in a dynamic way (Friedman et
al., 2017). This way of understanding technology therefore requires an approach to
technology design which keeps this interconnection in mind to ensure that responsible
innovation can take place.
The value sensitive design (VSD) approach, a principled approach to technology
design, takes as its philosophical starting point the notion that technologies are not
value-neutral (unlike
and instead are
(i.e., a symbiosis
technological determinism
social constructivism
) (Friedman and Hendry,
2019). The remainder of this work will be dedicated to showing how VSD may be used
to address some of the prominent ethical challenges of genetic engineering canvassed
VSD, sometimes referred to as ‘Values at Play’ or ‘Design for Values’ (Flanagan and
Nissenbaum, 2014; van den Hoven et al., 2015), is at core a tripartite methodology of
empirical, conceptual, and technical investigations. Whether carried out consecutively,
in parallel, or iteratively, these investigations involve: (1) empirical enquiries into
relevant stakeholders, their values, and their value understandings and priorities; (2)
conceptual enquiries into these values and their possible trade-offs; and (3) technical
enquiries into value issues raised by current technology and the possibilities for value
implementation into new designs.
VSD is characterized by at least seven structural features that make it comparatively
1. VSD is explicit in its anticipatory orientation. It affirms the long-term impacts
that technologies have on society and aims to be proactive by centralizing
human values early on and throughout the design process.
2. VSD expands the domain of relevant values to loci outside of the design
domain. This includes the home, cyberspace, schools, and other areas of
public life.
3. Beyond solely economic values, or the democratic values central to
approaches like participatory design, VSD expands the domain of relevant
values to focus on all values of moral importance.
4. VSD proposes an iterative and reflexive methodology of conceptual,
empirical, and technical investigations that allows it to arrive at greater
over time.
5. VSD is predicated on the
stance toward technology, and thus
affirms that both technology and social forces exist in a dynamic interplay.
Design then must be carried out with this covariance of technology and
society in mind.
6. VSD draws from moral epistemology and affirms that specific moral values
are independent of individuals’ beliefs in those values.
7. VSD rejects moral values social or cultural relativism and instead affirms the
independence of certain moral values regardless of sociocultural differences.
Values like justice, wellbeing, and dignity are framed as independent,
universal moral values in design (Friedman and Hendry, 2019). How those
Equifinality is the principle that a given end state can be reached from many potential means.
Designing genetic engineering technologies for human values
values are
manifested can be different due to the various socio-
cultural understandings of those values.
As its name suggests, VSD focuses on human values, bridging the gap between
design and ethics. Values are expressed and embedded in technology; they have real
and often non-obvious impacts on users and society. Values are understood in VSD as
“what a person or group of people consider important in life,” particularly those of
moral importance (Friedman et al., 2013, p.56). The integration of VSD into the design
practices of biotechnology more broadly, and genetic engineering technologies more
specifically, requires a fine-grained understanding of the various approaches toward
genetic engineering design.
As mentioned, one of the distinguishing features of VSD is its tripartite structure, its
three iterative and interdependent phases or ‘investigations’: conceptual, empirical, and
technical investigations (See Figure 1). These investigations can be carried out
consecutively, in parallel, or iteratively, and are meant to be in constant feedback with
one another to aid designers in arriving at a design that meets whatever requirements
are currently deemed relevant. Often, many VSD projects begin with conceptual
investigations which aim to construct working definitions and answers to questions like
What are the ethical issues?, What values are associated with those ethical issues?”,
and “Who are the people (or groups of people) that would feasibly be impacted on by
various design choices?. Because of this, conceptual investigations are often
understood to be the most philosophically oriented of the three investigations, and here
design teams can take up the philosophical literature itself as a starting point in drafting
thorough working understandings of those questions, which can then be referred to
and honed based on the other two investigations.
Figure 1. Tripartite VSD approach. Source: Umbrello (2020b).
Given genetic engineerings natural convergence with biology and medicine, a good
starting point for conceptual investigations would be evaluating the principles central to
biomedical ethics:
, non-maleficence, beneficence
, and
& Childress, 2019). These principles function well as starting points for VSD in the
domain of genetic engineering, given its emphasis on medical treatment and bodily
enhancement, and they moreover serve as a basis to help address more technology-
specific values and issues.
In particular, for medical (i.e., therapeutic) applications of
genetic engineering, these values can help to address many of the issues concerning the
safety, efficacy, and informed consent issues outlined in Section 3.1. An example in
genetic engineering which illustrates the value-sensitive design orientation is the
development of gene-engineered adoptive T cell therapies for the treatment of various
cancers. During the development of such therapies, concerns may arise relating to the
efficacy and safety of these treatments. Safety, in this case, would be a function of not
causing any unwanted genetic changes in the patient, not appropriating the necessary
cells from potentially dangerous sources (even if they can thereby be produced at
greater scale), and not exposing the production of such cells to manufacturing errors.
The VSD approach would therefore direct designers to seek to promote (or at least
not hinder) the value of safety when designing gene-engineered adoptive T cell
One can already imagine that the value of
might be that the type of change you make should
be a change that can be corrected/revised to allow for improvements and to make sure that technological
development does not penalize older generations (i.e., avoiding obsolescence of genetic modifications),
see Sparrow (2019) concerning genetic obsolescence.
These principles are also common starting points for other investigations utilizing the VSD approach.
See, for example, Umbrello et al. (2021); Pirni et al. (2021); Capasso and Umbrello (2022).
Conceptual Investigations
Values from both the relevant
philosophical literature and
those explicitly elicited from
stakeholders are determined
and investigated.
Technical Investigations
The technical limitations of the
technology itself are evaluated
for how they support or
contstrain indentified values
and design requirments
Empirical Investigations
Stakeholder values are
empirically evaluated through
socio-cultural norms and
translated into potential design
Designing genetic engineering technologies for human values
therapies, guiding them to bear in mind the preceding concerns. Efficacy, on the other
hand, would be the ability to induce remission or the senescence of cancer cells. To a
degree, efficacy is also predicated on the amount of acceptable damage that the therapy
is permitted to cause at the expense of its effectiveness. The VSD approach, with
regards to efficacy, would then guide designers to work toward the most effective
designs, while also working within the confines set by the value of safety. These are just
two of the values that can be framed using the philosophical medical literature, an
operationalization that is crucial to how the VSD approach works, particularly during
conceptual investigations. The ability to manage these tensions, find creative solutions,
and augment, rather than abdicate, designers’ ability to be responsible for the
responsibility of others is a hallmark of the approach (see Simon, 2017; Jenkins et al.,
2020; van Wynsberghe, 2020).
The VSD framework is fundamentally stakeholder-focused. How values are
understood, elicited, and defined, as well as how those values are then designed
contingent on stakeholders (see the list in §4.1) In particular, VSD includes several
methods and tools for stakeholder identification, elicitation, analysis, and legitimation.
These tools help to determine who the stakeholders are, which stakeholder groups
would be best represented in order to elicit their values, tools for such elicitations, and
tools for analysis of those elicitations (Cummings, 2006; Friedman et al., 2017).
is a central concept for VSD. When discussing values, the natural
question which emerges is
the values of whom?
. VSD is unique in its distinction
between two major types of stakeholders:
direct stakeholders
indirect stakeholders
Direct stakeholders are the individuals and/or groups that directly interact with the
system or its output. A prominent example of direct stakeholders would be the
designers themselves who daily work with the system and the system’s end users (once
the system is deployed). In the case of genetic engineering technology, biotechnologists
designing and using these systems would be such an example, as would recipients of
genetically-engineered therapies (either ameliorative or enhancement-oriented).
This focus on stakeholders also makes the VSD approach well-suited to guide biotechnology
researchers and designers toward genetic engineering technologies which are in compliance with existing
guidelines and codes of conduct concerning biotechnology and engineering biology. For example, the
European Commission’s
Users Guide to European Regulation in Biotechnology
Commission, 2014), the USA’s
FDA Biotechnology Guidelines
(FDA, 2019), the UK’s
(IB) Strategy (Rosemann and Molyneaux-Hodgson, 2019), or, more broadly, the British
Standards Institution’s
Responsible Innovation Guide
(BSI, 2020) all present guidelines for research, and
each include at least some relation between technological developments and stakeholder interests.
Indirect stakeholders are all the other entities affected by the use of the system, but who
do not directly interact with it. Indirect stakeholders are often the class of stakeholders
who are overlooked in the design of systems. We also need to keep in mind that VSD
is also temporally sensitive, because stakeholder groups can change over time, and so
designs which are sensitive to stakeholders’ values must also be able to change. This
means that future generations can, and perhaps should, be identified as an important
stakeholder group when designing technologies that have such multi-generational
In the case of genetic engineering, there are strong consent-based arguments that we
shouldn’t impose our current values on future generations; i.e., only those capable of
informed consent should be able to make the sacrifices that are part and parcel of such
genetic engineering (i.e.,
right to an ‘open’ future
), and future generations categorically
cannot give informed consent. However, perhaps the type of genetic modification (i.e.,
the particular gene/intervention) that the genome editing technologies are geared to
work on should those that are closely linked to the possibility of practicing interventions
which ensures an open future and a good quality of life for those who are born. As we
described in the previous section, there is a philosophical argument to be made that
astronauts aiming at extraterrestrial colonization should not procreate, given the need
for subsequent generations to be subjected to such genetic engineering for the purposes
of mere survival (see Balistreri and Umbrello, 2022a). What is then required is, as Lin
(2006) aptly argues, an economic model that is sensitive to future generations and that
permits new ways of living and innovating (see also Umbrello, 2022). VSD provides
the principled theory and method(s) to do exactly just that. The approach, particularly
in employing four multi-lifespan tools, is geared towards such an enterprise that genetic
engineering designers could quickly adopt:
1. Multi-lifespan timeline (
Priming longer-term and multi-generational
design thinking): Priming activity for longer-term design thinking, multi-lifespan
timelines prompt individuals to situate themselves in a longer timeframe relative
to the present, with attention to both societal and technological change which is
apt to occur across that extended timeframe. (i.e., Yoo et al., 2016)
2. Multi-lifespan co-design (
: Longer-term design thinking and
envisioning): Co-design activities and processes that emphasize longer-term
anticipatory futures with implications for multiple and future generations. These
activities are geared to stimulating participants' envisioning of future
[information] systems by: (1) enhancing participants' understanding of longer
timeframes (e.g., 100 years), and (2) guiding participants to effectively project
themselves long into the future in their design thinking. (i.e., Yoo et al., 2016, p.
Designing genetic engineering technologies for human values
3. Envisioning Cards (
: Value sensitive design toolkit for industry, research,
and educational practice): A set of 32 cards, the so-called Envisioning Cards
build on four criteria: stakeholders, time, values, and pervasiveness. Each card
contains on one side a title and an evocative image related to the card theme,
and on the flip side, the envisioning criterion, card theme, and a focused design
activity. Envisioning Cards can be used for ideation, co-design, heuristic critique,
and evaluation. (Friedman and Hendry, 2012; Yoo et al., 2013; Umbrello,
4. Agile Toolkit (
: Value sensitive design toolkit for longer-term design
thinking in industry): This is a quick starter guide to employing the VSD in Agile
Project Management. The toolkit aims to offer practitioners a means of
integrating VSD envisioning tools into Agile workflows, thus resisting and
ameliorating the short-termism implicit in Agile workflows while gaining its
iterative benefits. (Umbrello and Gambelin, 2021; 2022).
Multi-generation envisioning, as promoted by VSD, provides biotechnologists with
the means to design genetic engineering technologies, even for human enhancement
purposes, for changing values, promoting values such as that of an
open future,
worth living, justice, genetic integrity
, etc. Currently, lacunae in legislation concerning
the bounds by which genetic engineering (i.e., therapeutic vs. enhancement) can be
clearly delineated. VSD’s ability to integrate various sources of values i.e., the values
of care and those unique to genetic engineering [Table 1] permit it to begin closing
these gaps.
The introduction of biotechnologies like genetic engineering into society poses
novel and unforeseen (and possibly unforeseeable) issues for healthcare, and medicine
more broadly. Genetic engineering is not only a transformative technology but also a
convergent one, converging with other emerging technologies to blur the lines between
sectors and disciplines. This not only sparks new social and ethical issues, among
others, but also complicates how those issues can and should be confronted. In this
paper, we explored what we mean when we use the term genetic engineering, its
application in both humans and in other sectors, as well as how the technology is
multipurpose, meaning that it can be used not only in a curative fashion, i.e.,
therapeutically, but also to enhance humans. Rather than frame genetic engineering
technologies as static and look only at the ethical issues of their consequences, we
examined the values being invoked during ethical debates and interpreted them and
genetic engineering developments through the frame of design. More specifically, we
explored how we can design genetic engineering technologies
important human
values in order to proactively confront ethical complexities, rather than addressing
issues only after they are manifested.
The value sensitive design (VSD) approach presented provides both a principled
theory and method that is explicitly geared towards identifying and eliciting
stakeholders and their values, as well as designing not only for the present or near
future, but for multiple generations. VSD thus opens up design choice architectures to
permit future stakeholders and designers more choices over how they engage in design.
Value sensitive design was not developed with the specific application of
biotechnologies in mind, nor the more specific application to genetic engineering here
being discussed, but this paper shows that the
design turn in applied ethics
may be
fruitfully employed to help biomedical and genetic engineers to begin thinking about
design choices in a broader way, as determined and determinate of future choice
architectures. Likewise, it also shows how there is a starting point i.e., biomedical
ethical principles that can serve as a way of framing these more specific values and
principles relevant to genetic engineering within a language that is more approachable
for those familiar with it. This paper, however, is far from being definitive for these
debates. Rather, it aims to spark a new debate focused on the instrumentalization of
genetic engineering technologies, rather than seeing them as being part and parcel of
design histories and choices. VSD can also help in this latter regard. Philosophical
exploration of the issues falls under the purview of conceptual investigations, which
needs further work in looking at the specifics of various genetic engineering
technologies and applications. Likewise, empirical and technical investigations should
explore the potential people involved, how values and stakeholders change over time,
as well as how the architectures of the systems themselves support or constrain values
across multiple geographies, domains of application, and across time.
I would like to thank both Maurizio Balistreri and Nathan G. Wood for providing
useful feedback and advice on this paper.
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