ArticlePDF Available

Designing Genetic Engineering Technologies For Human Values

September 2022
Etica e Politica 24(2):481-510

Authors:

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.

Content uploaded by Steven Umbrello

Content may be subject to copyright.

481

Etica & Politica / Ethics & Politics

, XXIV, 2022, 2, pp. 481-510

ISSN: 1825-5167

D ESIG N ING GE NETIC EN G INEERIN G

TECH N OLO GIE S

FO R

H UM A N

VA L U ES

S T E V EN U M B R E LL O

Department of Values, Technology & Innovation

Delft University of Technology

s.umbrello@tudelft.nl

A B STRACT

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

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.

K E Y WORD S

Genetic engineering, genetic modification, value sensitive design, VSD, bioethics, applied ethics,

design

1. INTRODUCTION

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).

482 STEVEN UMBRELLO

482

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,

2001).

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

(Gouw,

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

483

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.

2. GENETIC ENGINEERING

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

484 STEVEN UMBRELLO

484

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

biotechnologies.

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

fashion:

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).

3. ISSUES WITH GENETIC ENGINEERING

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

485

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.

3.1 GENETIC ENGINEERING AND MEDICINE

What sets genetic engineering apart from the study of ‘genetics’ and ‘engineering’ is

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.

3.1.2 THERAPEUTIC 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

cells

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

causes

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).

486 STEVEN UMBRELLO

486

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).

3.1.2 SAFETY RISKS CONCERNING HUMAN GENETIC ENGINEERING

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

487

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).

3.1.3 INFORMED CONSENT

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).

3.2 GENETIC ENGINEERING AND HUMAN ENHANCEMENT

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

488 STEVEN UMBRELLO

488

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

difference

Principle of justice

Table 1. Less and more acceptable/plausible values concerning genetic engineering

3.2.1 LESS ACCEPTABLE/PLAUSIBLE VALUES

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

489

- 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 code’ or 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.

490 STEVEN UMBRELLO

490

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

the

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

just

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.

3.2.2 MORE ACCEPTABLE/PLAUSIBLE VALUES

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

491

3.2.2.1 RIGHT TO AN ‘OPEN FUTURE’ & RIGHT TO A LIFE WORTH

LIVING

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

generalized.

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.

492 STEVEN UMBRELLO

492

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

necessary.

3.2.2.2 PRINCIPLE OF JUSTICE

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

493

techniques conferring such traits, given their relative costs and elective nature (Veit,

2018).

4. DESIGNING GENETIC ENGINEERING

FOR

HUMAN VALUES

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.,

instrumentalism

] (Feenberg, 2009). However, this is only one way in which

we might consider technology. Aside from

instrumentalism,

there is also

technological

determinism

, which defends the notion that society is determined by the inextricable

advance of technology (Dafoe, 2015; Wyatt, 2008). On the other end, there is

social

constructivism

, 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

instrumentalism)

and instead are

interactional

(i.e., a symbiosis

between

technological determinism

and

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

above.

494 STEVEN UMBRELLO

494

4.1 VALUE SENSITIVE DESIGN

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

unique:

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

equifinality

over time.

5. VSD is predicated on the

interactional

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

495

values are

actually

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.

4.1.1 TRIPARTITE METHODOLOGY

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.

496 STEVEN UMBRELLO

496

Figure 1. Tripartite VSD approach. Source: Umbrello (2020b).

Given genetic engineering’s natural convergence with biology and medicine, a good

starting point for conceptual investigations would be evaluating the principles central to

biomedical ethics:

justice

, non-maleficence, beneficence

, and

autonomy

(Beauchamp

& 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

justice

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

requirments

Designing genetic engineering technologies for human values

497

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).

4.1.2 STAKEHOLDER-CENTRIC

The VSD framework is fundamentally stakeholder-focused. How values are

understood, elicited, and defined, as well as how those values are then designed

for,

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).

Stakeholder

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

and

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

User’s Guide to European Regulation in Biotechnology

(European

Commission, 2014), the USA’s

FDA Biotechnology Guidelines

(FDA, 2019), the UK’s

Industrial

Biotechnology

(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.

498 STEVEN UMBRELLO

498

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

impacts.

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 (

Purpose:

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 (

Purpose

: 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.

4423).

Designing genetic engineering technologies for human values

499

3. Envisioning Cards (

Purpose

: 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,

2022).

4. Agile Toolkit (

Purpose

: 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,

life

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.

5. CONCLUSIONS

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

500 STEVEN UMBRELLO

500

explored how we can design genetic engineering technologies

for

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.

ACKNOWLEDGEMENTS

I would like to thank both Maurizio Balistreri and Nathan G. Wood for providing

useful feedback and advice on this paper.

Designing genetic engineering technologies for human values

501

REFERENCES

Agar, N. (2008).

Liberal eugenics: In defence of human enhancement

. Hoboken, NJ:

John Wiley & Sons.

Appel, J. M. (2012). Toward an ethical eugenics: The case for mandatory preimplantation

genetic selection.

JONA's Healthcare Law, Ethics and Regulation

(1), 7-13.

https://doi.org/10.1097/NHL.0b013e318244c69b

Anzalone, A. V., Randolph, P. B., Davis, J. R., Sousa, A. A., Koblan, L. W., Levy, J. M.,

... & Liu, D. R. (2019). Search-and-replace genome editing without double-strand breaks or

donor DNA.

Nature, 576

(7785), 149-157. https://doi.org/10.1038/s41586-019-1711-4

Balistreri, M. (2022).

Il bambino migliore?

. Rome: Fandango.

Balistreri, M., & Umbrello, S. (2022a). Should the colonisation of space be based on

reproduction? Critical considerations on the choice of having a child in space.

Journal of

Responsible Technology

, 100040. https://doi.org/10.1016/j.jrt.2022.100040

Balistreri, M., & Umbrello, S. (2022b). Modifying the environment or human nature?

What is the right choice for space travel and Mars colonisation?

Working paper.

Baoutina, A., Alexander, I. E., Rasko, J. E., & Emslie, K. R. (2008). Developing strategies

for detection of gene doping.

The Journal of Gene Medicine, 10

(1), 3-20.

https://doi.org/10.1002/jgm.1114

Barnes, E. (2009). Disability, minority, and difference.

Journal of Applied Philosophy,

(4), 337-355. https://doi.org/10.1111/j.1468-5930.2009.00443.x

Barnes, E. (2016a).

The minority body: A theory of disability

. Oxford: Oxford University

Press.

Barnes, E. (2016b). Reply to Guy Kahane and Julian Savulescu.

Res Philosophica

(1),

295-309. https://doi.org/10.11612/resphil.2016.93.1.15

Bawa, R., Melethil, S., Simmons, W. J., & Harris, D. (2008). Nanopharmaceuticals:

patenting issues and FDA regulatory challenges.

The SciTech Lawyer

(2), 10-15.

Beauchamp, T., & Childress, J. (2019).

Principles of biomedical ethics

(8th ed.). Oxford:

Oxford University Press.

Bennett-Woods, D. (2008).

Nanotechnology: Ethics and society.

Boca Raton: CRC

Press.

Berg, P., Baltimore, D., Boyer, H. W., Cohen, S. N., Davis, R. W., Hogness, D. S., ... &

Zinder, N. D. (1974). Potential biohazards of recombinant DNA

molecules.

Science

185

(4148), 303-303. https://doi.org/10.1126/science.185.4148.303

Bess, M. (2016).

Make Way for the Superhumans: How the science of bio enhancement

is transforming our world, and how we need to deal with it

. London: Icon Books.

Bloom, M. V., Freyer, G. A., & Micklos, D. A. (1996).

Laboratory DNA science: an

introduction to recombinant DNA techniques and methods of genome analysis

. San

Francisco, CA: Benjamin Cummings Publishing Company, Inc.

502 STEVEN UMBRELLO

502

Bothast, R. J., Nichols, N. N., & Dien, B. S. (1999). Fermentations with new recombinant

organisms.

Biotechnology Progress

(5), 867-875. https://doi.org/10.1021/bp990087w

Bouchkouj, N., Kasamon, Y. L., de Claro, R. A., George, B., Lin, X., Lee, S., ... &

Pazdur, R. (2019). FDA approval summary: axicabtagene ciloleucel for relapsed or

refractory large B-cell lymphoma.

Clinical Cancer Research

, 25(6), 1702-1708.

https://doi.org/10.1158/1078-0432.CCR-18-2743

BSI. (2020).

PAS 440:2020 Responsible Innovation Guide

. London: The British

Standards Institution. Retrieved from https://www.adamson-

jones.co.uk/app/uploads/2020/04/PAS440_pdf.pdf

Buttigieg, J. (2012). The common heritage of mankind: from the law of the sea to the

human genome and cyberspace.

Symposia Melitensia, 8

, 81-92.

https://www.um.edu.mt/library/oar//handle/123456789/6883

Cantelmo, R. A., Da Silva, A. P., Mendes-Junior, C. T., & Dorta, D. J. (2020). Gene

doping: Present and future.

European Journal of Sport Science

(8), 1093-1101.

https://doi.org/10.1080/17461391.2019.1695952

Capasso, M., & Umbrello, S. (2022). Responsible nudging for social good: new healthcare

skills for AI-driven digital personal assistants.

Medicine, Health Care and Philosophy

(1),

11-22. https://doi.org/10.1007/s11019-021-10062-z

Collins, J. H., & Young, E. M. (2018). Genetic engineering of host organisms for

pharmaceutical synthesis.

Current opinion in biotechnology

, 191-200.

https://doi.org/10.1016/j.copbio.2018.02.001

Cordasco, K. M. (2013). Obtaining informed consent from patients: brief update

review.

Making health care safer II: An updated critical analysis of the evidence for patient

safety practices

2013

, 461-470.

Cummings, M. L. (2006). Integrating ethics in design through the value-sensitive design

approach.

Science and engineering ethics

(4), 701-715.

https://doi.org/10.1007/s11948-006-0065-0

Dafoe, A. (2015). On technological determinism: A typology, scope conditions, and a

mechanism.

Science, Technology, & Human Values

(6), 1047-1076.

https://doi.org/10.1177%2F0162243915579283

de Andrade, N. N. (2010). Human Genetic Manipulation and the Right to Identity: The

Contradictions of Human Rights Law in Regulating the Human Genome.

SCRIPTed

429. https://doi.org/10.2966/scrip.070310.429

de Melo-Martín, I. (2010). Defending human enhancement technologies: Unveiling

normativity.

Journal of Medical Ethics

(8), 483-487.

http://dx.doi.org/10.1136/jme.2010.036095

Desquilbet, M., & Bullock, D. S. (2009). Who pays the costs of non‐GMO segregation

and identity preservation?.

American Journal of Agricultural Economics, 91

(3), 656-672.

https://doi.org/10.1111/j.1467-8276.2009.01262.x

Designing genetic engineering technologies for human values

503

De Vendômois, J. S., Cellier, D., Vélot, C., Clair, E., Mesnage, R., & Séralini, G. E.

(2010). Debate on GMOs health risks after statistical findings in regulatory tests.

International Journal of Biological Sciences, 6

(6), 590.

https://doi.org/10.7150%2Fijbs.6.590

Devolder, K., Gyngell, C. (2017). Human Cloning: Arguments for. In:

Encyclopedia of

Life Sciences

. Hoboken, NJ: John Wiley & Sons Ltd, Chichester.

https://doi.org/10.1002/9780470015902.a0005224.pub2

Eapen, M., Rocha, V., Sanz, G., Scaradavou, A., Zhang, M. J., Arcese, W., ... & Wagner,

J. E. (2010). Effect of graft source on unrelated donor haemopoietic stem-cell transplantation

in adults with acute leukaemia: a retrospective analysis.

The lancet oncology

(7), 653-660.

https://doi.org/10.1016/S1470-2045(10)70127-3

Ebbesen, M., Jensen, T. G. (2006). Nanomedicine: techniques, potentials, and ethical

implications. In:

Journal of Biomedicine and Biotechnology.

Volume 2006, Article

ID51516, Pages 1–11. https://doi.org/10.1155/JBB/2006/51516

Ellis, G. I., Sheppard, N. C., & Riley, J. L. (2021). Genetic engineering of T cells for

immunotherapy.

Nature Reviews Genetics, 22

(7), 427-447.

https://doi.org/10.1038/s41576-021-00329-9

European Commission. (2014).

Users Guide to European Regulation in Biotechnology.

European Commission.

Retrieved from

https://ec.europa.eu/docsroom/documents/1652/attachments/1/translations

Ewart, D., Peterson, E. J., & Steer, C. J. (2019, August). A new era of genetic engineering

for autoimmune and inflammatory diseases. In

Seminars in Arthritis and Rheumatism

(Vol.

49, No. 1, pp. e1-e7). https://doi.org/10.1016/j.semarthrit.2019.05.004

FDA. (2019).

Guidance for Industry: Voluntary Labeling Indicating Whether Foods

Have or Have Not Been Derived from Genetically Engineered Plants

. Rockville, MD: Food

and Drug Administration.

Feenberg, A. (2009). What is Philosophy of Technology?. In A. Jones & M. de

Vries,

International Handbook of Research and Development in Technology

Education

(pp. 159–166). Rotterdam: Sense Publishers.

https://doi.org/10.1163/9789087908799_016

Ferrara, J. L., Levine, J. E., Reddy, P., & Holler, E. (2009). Graft-versus-host disease.

The

Lancet

373

(9674), 1550-1561. https://doi.org/10.1016/S0140-6736(09)60237-3

Flanagan, M., & Nissenbaum, H. (2014).

Values at play in digital games

. Cambridge, MA:

MIT Press.

Floridi, L., Cowls, J., Beltrametti, M., Chatila, R., Chazerand, P., Dignum, V., ... &

Vayena, E. (2018). AI4People—An ethical framework for a good AI society: Opportunities,

risks, principles, and recommendations.

Minds and machines

(4), 689-707.

https://doi.org/10.1007/s11023-018-9482-5

504 STEVEN UMBRELLO

504

Friedman, B., & Hendry, D. (2012, May). The envisioning cards: a toolkit for catalyzing

humanistic and technical imaginations. In

Proceedings of the SIGCHI conference on

human factors in computing systems

(pp. 1145-1148).

https://doi.org/10.1145/2207676.2208562

Friedman, B., Hendry, D. G., & Borning, A. (2017). A survey of value sensitive design

methods.

Foundations and Trends® in Human–Computer Interaction

(2), 63-125.

http://dx.doi.org/10.1561/1100000015

Friedman, B., & Hendry, D. G. (2019).

Value sensitive design: Shaping technology with

moral imagination

. Cambridge, MA: MIT Press.

Friedman, B., Kahn, P.H., Borning, A., Huldtgren, A. (2013). Value Sensitive Design

and Information Systems. In: Doorn, N., Schuurbiers, D., van de Poel, I., Gorman, M. (eds)

Early engagement and new technologies: Opening up the laboratory

. Philosophy of

Engineering and Technology, vol 16. Dordrecht: Springer. https://doi.org/10.1007/978-

94-007-7844-3_4

Garland-Thomson, R. (2012). The case for conserving disability.

Journal of bioethical

inquiry, 9

(3), 339-355. https://doi.org/10.1007/s11673-012-9380-0

Garland-Thomson, R. (2020). How we got to CRISPR: The dilemma of being human.

Perspectives in biology and medicine, 63

(1), 28-43.

https://doi.org/10.1353/pbm.2020.0002

Giubilini, A., & Sanyal, S. (2016). Challenging Human Enhancement. In S. Clark, J.

Savulescu, T. Coady, A. Giubilini & S. Sanyal,

The Ethics of Human Enhancement:

Understanding the Debate

. Oxford University Press. Retrieved 15 July 2022, from

https://doi.org/10.1093/acprof:oso/9780198754855.003.0001.

Gouw, A.M. (2020). CRISPR Challenges and Opportunities for Space Travel. In: Szocik,

K. (eds)

Human Enhancements for Space Missions.

Space and Society. Springer, Cham.

https://doi.org/10.1007/978-3-030-42036-9_2

Hadrup, N., & Lam, H. R. (2014). Oral toxicity of silver ions, silver nanoparticles and

colloidal silver–a review.

Regulatory Toxicology and Pharmacology

(1), 1-7.

https://doi.org/10.1016/j.yrtph.2013.11.002

Harris, J. (2004).

On cloning

. London: Routledge.

Harris, J. (2009). Enhancements Are a Moral Obligation. In J. Savulescu & N.

Bostrom,

Human Enhancement

(pp. 131-154). Oxford: Oxford University Press.

Harris, J. (2014). Time to Exorcise the Cloning Demo.

Cambridge Quarterly of

Healthcare Ethics

, 23, 53 – 62. https://doi.org/10.1017/S0963180113000443

Harris, J. (2017). How to welcome new technologies: some comments on the

article by Inmaculada de Melo-Martin,

Cambridge Quarterly of Healthcare Ethics

(1): 166–72. https://doi.org/10.1017/S0963180116000736

Designing genetic engineering technologies for human values

505

Hirayama, A. V., Gauthier, J., Hay, K. A., Voutsinas, J. M., Wu, Q., Pender, B. S., ... &

Turtle, C. J. (2019). High rate of durable complete remission in follicular lymphoma after

CD19 CAR-T cell immunotherapy.

Blood, The Journal of the American Society of

Hematology

134

(7), 636-640. https://doi.org/10.1182/blood.2019000905

Hodgkinson, C. P., Gomez, J. A., Mirotsou, M., & Dzau, V. J. (2010). Genetic

engineering of mesenchymal stem cells and its application in human disease

therapy.

Human gene therapy

(11), 1513-1526.

https://doi.org/10.1089/hum.2010.165

Iravani, S., & Varma, R. S. (2019). Biofactories: engineered nanoparticles via genetically

engineered organisms.

Green Chemistry

(17), 4583-4603.

https://doi.org/10.1039/C9GC01759C

Jain, K., Kumar Mehra, N., & K Jain, N. (2015). Nanotechnology in drug delivery: safety

and toxicity issues.

Current pharmaceutical design

(29), 4252-4261.

https://doi.org/10.2174/1381612821666150901103208

Jenkins, K. E., Spruit, S., Milchram, C., Höffken, J., & Taebi, B. (2020). Synthesizing

value sensitive design, responsible research and innovation, and energy justice: A conceptual

review.

Energy Research & Social Science

, 101727.

https://doi.org/10.1016/j.erss.2020.101727

Kahane, G., & Savulescu, J. (2016). Disability and mere difference.

Ethics

126

(3), 774-

788. https://doi.org/10.1086/684709

King, D. S. (1999). Preimplantation genetic diagnosis and the'new'eugenics.

Journal of

Medical Ethics

(2), 176. https://doi.org/10.1136%2Fjme.25.2.176

Klein, H. K., & Kleinman, D. L. (2002). The social construction of technology: Structural

considerations.

Science, Technology, & Human Values

(1), 28-52.

https://doi.org/10.1177%2F016224390202700102

Kochenderfer, J. N., Dudley, M. E., Carpenter, R. O., Kassim, S. H., Rose, J. J., Telford,

W. G., ... & Rosenberg, S. A. (2013). Donor-derived CD19-targeted T cells cause regression

of malignancy persisting after allogeneic hematopoietic stem cell transplantation.

Blood, The

Journal of the American Society of Hematology

122

(25), 4129-4139.

https://doi.org/10.1182/blood-2013-08-519413

Krimsky, S. (2019). Ten ways in which He Jiankui violated ethics.

Nature Biotechnology,

(1), 19-20. https://doi.org/10.1038/nbt.4337

Kwoczek, J., Riese, S. B., Tischer, S., Bak, S., Lahrberg, J., Oelke, M., ... & Eiz‐Vesper,

B. (2018). Cord blood–derived T cells allow the generation of a more naïve tumor‐reactive

cytotoxic T‐cell phenotype.

Transfusion

(1), 88-99. https://doi.org/10.1111/trf.14365

506 STEVEN UMBRELLO

506

Levy, N., & Lotz, M. (2005). Reproductive cloning and a (kind of) genetic fallacy.

Bioethics, 19

(3), 232-250. https://doi.org/10.1111/j.1467-8519.2005.00439.x

Lin, P. (2006). Look before taking another leap for mankind—Ethical and social

considerations in rebuilding society in space.

Astropolitics

(3), 281-294.

https://doi.org/10.1080/14777620601039701

Lin, P., & Allhoff, F. (2008). Against unrestricted human enhancement.

Journal of

Evolution & Technology

, 18(1), 35.

Locke, F. L., Ghobadi, A., Jacobson, C. A., Miklos, D. B., Lekakis, L. J., Oluwole, O.

O., ... & Neelapu, S. S. (2019). Long-term safety and activity of axicabtagene ciloleucel in

refractory large B-cell lymphoma (ZUMA-1): a single-arm, multicentre, phase 1–2 trial.

The

lancet oncology

(1), 31-42. https://doi.org/10.1016/S1470-2045(18)30864-7

Loganathan, R., Balasubramanian, R., Mani, K., & Gurunathan, S. (2009). Productivity

and profitability impact of genetically modified crops–an economic analysis of Bt cotton

cultivation in Tamil Nadu.

Agricultural Economics research review

(347-2016-16870),

331-340. http://dx.doi.org/10.22004/ag.econ.57472

Marteau, T. M., van Duijn, M., & Ellis, I. (1992). Effects of genetic screening on

perceptions of health: a pilot study.

Journal of Medical Genetics, 29

(1), 24-26.

http://dx.doi.org/10.1136/jmg.29.1.24

Maude, S. L., Laetsch, T. W., Buechner, J., Rives, S., Boyer, M., Bittencourt, H., ... &

Grupp, S. A. (2018). Tisagenlecleucel in children and young adults with B-cell lymphoblastic

leukemia.

New England Journal of Medicine

378

(5), 439-448.

https://doi.org/10.1056/NEJMoa1709866

Minguell, J. J., Erices, A., & Conget, P. (2001). Mesenchymal stem cells.

Experimental

biology and medicine

226

(6), 507-520.

https://doi.org/10.1177%2F153537020122600603

Morrow, J. F. (1979). [1] Recombinant DNA techniques.

Methods in enzymology

, 3-

24. https://doi.org/10.1016/0076-6879(79)68003-5

Mulligan, R. C. (1993). The basic science of gene therapy.

Science

260

(5110), 926-932.

https://doi.org/10.1126/science.8493530

Nelson, G. C. (2001).

Genetically modified organisms in agriculture: economics and

politics

. Amsterdam: Elsevier.

Nicholl, D. S. (2008).

An introduction to genetic engineering

. Cambridge: Cambridge

University Press.

Normile, D. (2019).

Chinese scientist who produced genetically altered babies sentenced

to 3 years in jail

. Science. https://doi.org/10.1126/science.aba7347

Designing genetic engineering technologies for human values

507

Oakland, M., Sinn, P. L., & McCray Jr, P. B. (2012). Advances in cell and gene-based

therapies for cystic fibrosis lung disease.

Molecular Therapy

(6), 1108-1115.

https://doi.org/10.1038/mt.2012.32

O'Leary, M. C., Lu, X., Huang, Y., Lin, X., Mahmood, I., Przepiorka, D., ... & Pazdur,

R. (2019). FDA Approval Summary: Tisagenlecleucel for Treatment of Patients with

Relapsed or Refractory B-cell Precursor Acute Lymphoblastic LeukemiaFDA Approval

Summary: Tisagenlecleucel for R/R BCP ALL.

Clinical Cancer Research

(4), 1142-1146.

https://doi.org/10.1158/1078-0432.CCR-18-2035

Ossorio, P. N. (2007). The human genome as common heritage: common sense or legal

nonsense?.

The Journal of Law, Medicine & Ethics

, 35(3), 425-439.

https://doi.org/10.1111/j.1748-720X.2007.00165.x

Pinch, T. J., & Bijker, W. E. (1984). The social construction of facts and artefacts: Or

how the sociology of science and the sociology of technology might benefit each other.

Social

studies of science

(3), 399-441. https://doi.org/10.1177%2F030631284014003004

Pirni, A., Balistreri, M., Capasso, M., Umbrello, S., & Merenda, F. (2021). Robot Care

Ethics Between Autonomy and Vulnerability: Coupling Principles and Practices in

Autonomous Systems for Care.

Frontiers in Robotics and AI

, 184.

https://doi.org/10.3389/frobt.2021.654298

Porcari A., Buceti G., Pimponi D., Gonzalez G., Buchinger E., Kienegger M., Zahradnik

G., Bernstein MJ, (2022), Ethical and social impacts-driven horizon scanning of new and

emerging technologies.

Deliverable 1.3 to the European Commission

. TechEthos Project

Deliverable. Available at: www.techethos.eu.

Poste, G. (1999). Privacy and confidentiality in the age of genetic engineering.

Tex. Rev.

L. & Pol., 4

, 25.

Primc, N. (2020). Do we have a right to an unmanipulated genome? The human genome

as the common heritage of mankind.

Bioethics

(1), 41-48.

https://doi.org/10.1111/bioe.12608

Raben, N., Danon, M., Lu, N., Lee, E., Shliselfeld, L., Skurat, A. V., ... & Plotz, P. (2001).

Surprises of genetic engineering: a possible model of polyglucosan body

disease.

Neurology

(12), 1739-1745. https://doi.org/10.1212/WNL.56.12.1739

Robertson, J. A. (2005). Ethics and the future of preimplantation genetic

diagnosis.

Reproductive BioMedicine Online

, 97-101. https://doi.org/10.1016/S1472-

6483(10)62214-6

Rosemann, A., & Molyneux-Hodgson, S. (2020). Industrial biotechnology: to what extent

is responsible innovation on the agenda?.

Trends in biotechnology

(1), 5-7.

https://doi.org/10.1016/j.tibtech.2019.07.006

Scanlon, T. (2000).

What we owe to each other

. Cambridge, MA: Belknap Press.

508 STEVEN UMBRELLO

508

Schuster, S. J., Bishop, M. R., Tam, C. S., Waller, E. K., Borchmann, P., McGuirk, J.

P., ... & Maziarz, R. T. (2019). Tisagenlecleucel in adult relapsed or refractory diffuse large

B-cell lymphoma.

New England Journal of Medicine, 380

(1), 45-56.

https://doi.org/10.1056/nejmoa1804980

Simon, J. (2017). Value-sensitive design and responsible research and innovation. In S.

Hansson,

The Ethics of Technology: Methods and Approaches

(pp. 219-235). Lanham,

MD: Rowman & Littlefield.

Simmons, D. (2008). Genetic inequality: Human genetic engineering.

Nature

Education

(1), 173.

Sorgner, S. L. (2016). The Stoic Sage 3.0: A Realistic Goal of Moral (Bio)Enhancement

Supporters?.

Journal of Ethics and Emerging Technologies

(1), 83–93.

https://doi.org/10.55613/jeet.v26i1.53

Smith, M. (2022).

Genetic Engineering

. Genome.gov. Retrieved 12 July 2022, from

https://www.genome.gov/genetics-glossary/Genetic-

Engineering#:~:text=Genetic%20engineering%20(also%20called%20genetic,a%20ne

w%20segment%20of%20DNA.

Sparrow, R. (2019). Yesterday’s child: How gene editing for enhancement will produce

obsolescence—and why it matters.

The American Journal of Bioethics

(7), 6-15.

https://doi.org/10.1080/15265161.2019.1618943

Specker, J., Focquaert, F., Raus, K., Sterckx, S., & Schermer, M. (2014). The ethical

desirability of moral bioenhancement: a review of reasons.

BMC Medical Ethics, 15

(1), 1-

17. https://doi.org/10.1186/1472-6939-15-67

TechEthos. (2022).

Technology family

. TechEthos. Retrieved 8 July 2022, from

https://www.techethos.eu/glossary/technology-family/.

Timmermans, J., Zhao, Y., & van den Hoven, J. (2011). Ethics and nanopharmacy: Value

sensitive design of new drugs.

Nanoethics

(3), 269-283. https://doi.org/10.1007/s11569-

011-0135-x

Tripathi, K. K. (2000). Bioinformatics: The foundation of present and future

biotechnology.

Current Science

(5), 570-575. https://www.jstor.org/stable/24105072

Tüting, T., Storkus, W. J., & Lotze, M. T. (1997). Gene-based strategies for the

immunotherapy of cancer.

Journal of molecular medicine

(7), 478-491.

https://doi.org/10.1007/s001090050133

Umbrello, S. (2020a). Combinatory and Complementary Practices of Values and Virtues

in Design: A Reply to Reijers and Gordijn.

Filosofia

, (65), 107-121.

https://doi.org/10.13135/2704-8195/5236

Umbrello, S. (2020b). Meaningful Human Control Over Smart Home

Systems.

HUMANA.MENTE Journal of Philosophical Studies

(37), 40-65. Retrieved

from https://www.humanamente.eu/index.php/HM/article/view/315

Designing genetic engineering technologies for human values

509

Umbrello, S. (2022). The Role of Engineers in Harmonising Human Values for AI

Systems Design.

Journal of Responsible Technology

, 100031.

https://doi.org/10.1016/j.jrt.2022.100031

Umbrello, S., Capasso, M., Balistreri, M., Pirni, A., & Merenda, F. (2021). Value sensitive

design to achieve the UN SDGs with AI: A case of elderly care robots.

Minds and

Machines

(3), 395-419. https://doi.org/10.1007/s11023-021-09561-y

Umbrello, S., Bernstein, M. J., Vermaas, P. E., Resseguier, A., Gonzalez, G., Porcari, A.,

Grinbaum, A., & Adomaitis, L. (2022). From speculation to reality: extending anticipatory

ethics for emerging technologies (ATE) for practice,

PrePrint

Umbrello, S., & Gambelin, O. (2021).

Value Sensitive Design: An Agile Toolkit.

http://dx.doi.org/10.13140/RG.2.2.18543.36006

Umbrello, S., & Gambelin, O. (2022). Agile as a Vehicle for Values: A Value Sensitive

Design Toolkit, In Albrecht Fritzsche and Andres Santa-Maria (eds.),

Rethinking

Technology and Engineering: Dialogues across disciplines and geographies,

Cham:

Springer.

Forthcoming

. http://dx.doi.org/10.13140/RG.2.2.17064.08965/1

UNESCO. (1997). Universal declaration on the human genome and human rights.

The

General Assembly of the United Nations endorsed the UNESCO Declaration in Dec. 1998.

United Nations Press Release GA/9532

van den Hoven, MJ., Vermaas, PE., & van de Poel, IR. (2015). Design for values: An

introduction. In J. van den Hoven, PE. Vermaas, & I. van de Poel (Eds.),

Handbook of

ethics, values, and technological design: sources, theory, values and application domains

(pp.

1-7). Springer. https://doi.org/10.1007/978-94-007-6970-0_1

van den Hoven, J. (2017). The Design Turn in Applied Ethics. In J. Van den Hoven, S.

Miller, & T. Pogge (Eds.),

Designing in Ethics

(pp. 11-31). Cambridge: Cambridge

University Press. https://doi.org/10.1017/9780511844317.002

van Wynsberghe, A. (2020). Designing Robots for Care: Care Centered Value-Sensitive

Design. In W. Wallach & P. Asaro,

Machine Ethics and Robot Ethics

(pp. 185-211).

Routledge. https://doi.org/10.4324/9781003074991-17

Veit, W. (2018). Cognitive enhancement and the threat of inequality.

Journal of Cognitive

Enhancement, 2

(4), 404-410. https://doi.org/10.1007/s41465-018-0108-x

Verma, I. M., Naldini, L., Kafri, T., Miyoshi, H., Takahashi, M., Blömer, U., ... & Gage,

F. H. (2000). Gene therapy: promises, problems and prospects. In

Genes and resistance to

disease

(pp. 147-157). Berlin, Heidelberg: Springer. https://doi.org/10.1007/978-3-642-

56947-0_13

Winner, L. (1980). Do artifacts have politics?.

Daedalus

109

(1), 121-36.

https://www.jstor.org/stable/20024652

Wirth, T., Parker, N., & Ylä-Herttuala, S. (2013). History of gene therapy.

Gene

525

(2),

162-169. https://doi.org/10.1016/j.gene.2013.03.137

510 STEVEN UMBRELLO

510

Wooldridge, E. Q., & Murray Jr, R. F. (1988). The Health Orientation Scale: a measure

of feelings about sickle cell trait.

Social biology

(1-2), 123-136.

https://doi.org/10.1080/19485565.1988.9988694

Wright, S. (1986). Recombinant DNA technology and its social transformation, 1972 -

1982.

Osiris

, 303-360. https://doi.org/10.1086/368659

Wyatt, S. (2008). Technological determinism is dead; Long live technological

determinism. In E. Hackett, O. Amsterdamska, M. Lynch & J. Wajcman,

Handbook of

Science and Technology Studies

(pp. 165-180). Cambridge, MA: MIT Press.

Yang, F., Cho, S. W., Son, S. M., Bogatyrev, S. R., Singh, D., Green, J. J., ... & Anderson,

D. G. (2010). Genetic engineering of human stem cells for enhanced angiogenesis using

biodegradable polymeric nanoparticles.

Proceedings of the National Academy of

Sciences

107

(8), 3317-3322. https://doi.org/10.1073/pnas.0905432106

Yoo, D., Derthick, K., Ghassemian, S., Hakizimana, J., Gill, B., & Friedman, B. (2016,

May). Multi-lifespan design thinking: two methods and a case study with the Rwandan

diaspora. In

Proceedings of the 2016 CHI conference on human factors in computing

systems

(pp. 4423-4434). https://doi.org/10.1145/2858036.2858366

Yoo, D., Huldtgren, A., Woelfer, J. P., Hendry, D. G., & Friedman, B. (2013, April). A

value sensitive action-reflection model: evolving a co-design space with stakeholder and

designer prompts. In

Proceedings of the SIGCHI conference on human factors in

computing systems

(pp. 419-428). https://doi.org/10.1145/2470654.2470715

ResearchGate has not been able to resolve any citations for this publication.

Modifying the Environment or Human Nature? What is the Right Choice for Space Travel and Mars Colonisation?

Article

Full-text available

Apr 2023

As space travel and intentions to colonise other planets are becoming the norm in public debate and scholarship, we must also confront the technical and survival challenges that emerge from these hostile environments. This paper aims to evaluate the various arguments proposed to meet the challenges of human space travel and extraterrestrial planetary colonisation. In particular, two primary solutions have been present in the literature as the most straightforward solutions to the rigours of extraterrestrial survival and flourishing: (1) geoengineering, where the environment is modified to become hospitable to its inhabitants, and (2) human (bio)enhancement where the genetic heritage of humans is modified to make them more resilient to the difficulties they may encounter as well as to permit them to thrive in non-terrestrial environments. Both positions have strong arguments supporting them but also severe philosophical and practical drawbacks when exposed to different circumstances. This paper aims to show that a principled stance where one position is accepted wholesale necessarily comes at the opportunity cost of the other where the other might be better suited, practically and morally. This paper concludes that case-by-case evaluations of the solutions to space travel and extraterrestrial colonisation are necessary to ensure moral congruency and the survival and flourishing of astronauts now and into the future.

Should the colonisation of space be based on reproduction? Critical considerations on the choice of having a child in space

Article

Full-text available

Jul 2022

This paper aims to argue for the thesis that it is not a priori morally justified that the first phase of space colonisation is based on sexual reproduction. We ground this position on the argument that, at least in the first colonisation settlements, those born in space may not have a good chance of having a good life. This problem does not depend on the fact that life on another planet would have to deal with issues such as solar radiation or with the decrease or entire absence of the force of gravity. These issues could plausibly be addressed given that the planets or settlements we will feasibly colonise could be completely transformed through geoengineering processes. Likewise, the ability of humans to live in space could be enhanced through genetic modification interventions. Even if, however, the problems concerning survival in space were solved, we think that, at least in the first period of colonisation of space or other planets, giving birth to children in space could be a morally irresponsible choice since we argue, the life we could give them might not be good enough. We contend that this is the case since when we decide to have a baby. We argue that it is not morally right to be content that our children have a minimally sufficient life worth living; before we give birth to children in space, we should make sure we can give them a reasonable chance of having a good life. This principle applies both on Earth - at least where you can choose - and for space travel.

The Stoic Sage 3.0: A Realistic Goal of Moral (Bio)Enhancement Supporters?

Article

Full-text available

Feb 2016

Stefan Lorenz Sorgner

I propose to show that any direct moral bioenhancement procedures that could be realized within a relatively short period of time are not realistic options. This does not have to worry us, however, because alternative options for promoting morality are available. Consequently, moral bioenhancement is not an option for dealing successfully with the increased potential destructiveness of contemporary technologies within a short-term framework, i.e. within this century. In what follows, I will explain why this is the case, and why, contrary to Ingmar Persson and Julian Savulescu, I think this need not worry us too much. In section 1., I will critically analyze moral bioenhancement by means of citalopram, aimed at reducing the tendency to harm others directly. I give this prominence because it could be a practical option for altering human emotions and dispositions – to my mind, it seems the most promising practical option in this field. In later sections, I will consider other means of realizing moral bioenhancement, since the first option does not do the job it is supposed to, and because Persson and Savulescu are concerned with alternative approaches.

The Role of Engineers in Harmonising Human Values for AI Systems Design

Article

Full-text available

Apr 2022

Steven Umbrello

Most engineers Fwork within social structures governing and governed by a set of values that primarily emphasise economic concerns. The majority of innovations derive from these loci. Given the effects of these innovations on various communities, it is imperative that the values they embody are aligned with those societies. Like other transformative technologies, artificial intelligence systems can be designed by a single organisation but be diffused globally, demonstrating impacts over time. This paper argues that in order to design for this broad stakeholder group, engineers must adopt a systems thinking approach that allows them to understand the sociotechnicity of artificial intelligence systems across sociocultural domains. It claims that value sensitive design, and envisioning cards in particular, provides a solid first step towards helping designers harmonise human values, understood across spatiotemporal boundaries, with economic values, rather than the former coming at the opportunity cost of the latter.

Responsible nudging for social good: new healthcare skills for AI-driven digital personal assistants

Article

Full-text available

Mar 2022
Med Healthc Philos

Traditional medical practices and relationships are changing given the widespread adoption of AI-driven technologies across the various domains of health and healthcare. In many cases, these new technologies are not specific to the field of healthcare. Still, they are existent, ubiquitous, and commercially available systems upskilled to integrate these novel care practices. Given the widespread adoption, coupled with the dramatic changes in practices, new ethical and social issues emerge due to how these systems nudge users into making decisions and changing behaviours. This article discusses how these AI-driven systems pose particular ethical challenges with regards to nudging. To confront these issues, the value sensitive design (VSD) approach is adopted as a principled methodology that designers can adopt to design these systems to avoid harming and contribute to the social good. The AI for Social Good (AI4SG) factors are adopted as the norms constraining maleficence. In contrast, higher-order values specific to AI, such as those from the EU High-Level Expert Group on AI and the United Nations Sustainable Development Goals, are adopted as the values to be promoted as much as possible in design. The use case of Amazon Alexa's Healthcare Skills is used to illustrate this design approach. It provides an exemplar of how designers and engineers can begin to orientate their design programs of these technologies towards the social good.

Robot Care Ethics Between Autonomy and Vulnerability: Coupling Principles and Practices in Autonomous Systems for Care

Article

Full-text available

Jun 2021

Technological developments involving robotics and artificial intelligence devices are being employed evermore in elderly care and the healthcare sector more generally, raising ethical issues and practical questions warranting closer considerations of what we mean by "care" and, subsequently, how to design such software coherently with the chosen definition. This paper starts by critically examining the existing approaches to the ethical design of care robots provided by Aimee van Wynsberghe, who relies on the work on the ethics of care by Joan Tronto. In doing so, it suggests an alternative to their non-principled approach, an alternative suited to tackling some of the issues raised by Tronto and van Wynsberghe, while allowing for the inclusion of two orientative principles. Our proposal centres on the principles of autonomy and vulnerability, whose joint adoption we deem able to constitute an original revision of a bottom-up approach in care ethics. Conclusively, the ethical framework introduced here integrates more traditional approaches in care ethics in view of enhancing the debate regarding the ethical design of care robots under a new lens.

Value Sensitive Design to Achieve the UN SDGs with AI: A Case of Elderly Care Robots

Article

Full-text available

Sep 2021
MIND MACH

Healthcare is becoming increasingly automated with the development and deployment of care robots. There are many benefits to care robots but they also pose many challenging ethical issues. This paper takes care robots for the elderly as the subject of analysis, building on previous literature in the domain of the ethics and design of care robots. Using the value sensitive design (VSD) approach to technology design, this paper extends its application to care robots by integrating the values of care, values that are specific to AI, and higher-scale values such as the United Nations Sustainable Development Goals (SDGs). The ethical issues specific to care robots for the elderly are discussed at length alongside examples of specific design requirements that work to ameliorate these ethical concerns.

Agile as a Vehicle for Values: A Value Sensitive Design Toolkit

Preprint

Full-text available

Apr 2021

The ethics of technology has primarily focused on what values are and how they can be embedded in technologies through design. In this context, some work has been done to show the efficacy of a number of design approaches. However, existing studies have not clearly pointed out the ways which design-for-values approaches can be used by design team managers to properly organize and use technologies in practice. This chapter attempts to fill this gap by discussing the value sensitive design (VSD) approach as a useful means of co-designing technologies as a toolkit for existing workflow management, in this case Agile. It will be demonstrated that, VSD shows promise as a way of democratically designing technologies as well as fostering democratic technology policy innovation.

Genetic engineering of T cells for immunotherapy

Article

Feb 2021

Genetically engineered T cell immunotherapies have provided remarkable clinical success to treat B cell acute lymphoblastic leukaemia by harnessing a patient's own T cells to kill cancer, and these approaches have the potential to provide therapeutic benefit for numerous other cancers, infectious diseases and autoimmunity. By introduction of either a transgenic T cell receptor or a chimeric antigen receptor, T cells can be programmed to target cancer cells. However, initial studies have made it clear that the field will need to implement more complex levels of genetic regulation of engineered T cells to ensure both safety and efficacy. Here, we review the principles by which our knowledge of genetics and genome engineering will drive the next generation of adoptive T cell therapies.

International Handbook of Research and Development in Technology Education

Book

Jan 2009

Designing Genetic Engineering Technologies For Human Values

Abstract

Recommendations

Designing Genetic Engineering Technologies for Human Values

Combinatory and Complementary Practices of Values and Virtues in Design: A Reply to Reijers and Gord...

Values, Imagination, and Praxis: Towards a Value Sensitive Future with Technology

The Role of Engineers in Harmonising Human Values for AI Systems Design