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The Digital Divide is a concept that was originally used to describe the difference in access to (digital) information and communication technologies (ICTs). First, it was introduced to engage the question of differences between rural and urban areas, then it was extended to cover differences in terms of social (in)equality based on class, race, and age that were registered as quickly as differences between the Global North and South. Subsequently, researchers introduced the idea of the Digital Divide as one that can also not be reduced to a problem of access, since other factors – such as competence and motivation, among others – have an important role to play. It is also becoming clear that different ﬁelds, such as the health care and biomedical sector, evolve their own particular conditions for the deployment of ICTs, which can render the Digital Divide extremely ﬁeld speciﬁc. The Digital Divides in health care and biomedicine are still emerging and changing, leading to speciﬁc (bio)ethical problems, some of which have yet to fully establish themselves but among which privacy concerns and social justice concerns feature most prominently.
In 2015, American President Barack Obama in the State of the Union address announced an ambitious agenda of Precision Medicine, following in the wake of his no less ambitious effort in health care reform, otherwise known as Affordable Care Act or “Obamacare.” Signing up for Obamacare already required health care recipients to have access and competencies available for using a digital information architecture. Precision Medicine will further require a number of practices that include both ethical as well as practical concerns: There is, for example, the question of access to genetic materials from a vast patient population that needs to be correlated with large personal data sets. This requires patients to make available private information for Big Data approaches. As a consequence, Precision Medicine demands of patients an understanding of the consequences that these practices have for privacy. Whether people are empowered and enabled to participate in this care regime or not hinges on several factors. The various combinations of these factors that lead to a lack of access, power, capability, and autonomy constitute one or the other incarnation of the Digital Divide.
Originally, concern about a Digital Divide revolved around the question of accessibility, differing between urban and rural areas. This can be largely considered a techno geographic problem. However, it became clear very quickly that the Digital Divide affected different populations unevenly not only in techno geographic terms but along social and political dimensions as well. These result in larger ethical and moral concerns. Individual sectors, such as the sector of health care, public health, and biomedicine, no longer merely become increasingly imbricated with digital information architectures and ICTs but instead evolve their own unique versions of access, competencies, usage, and motivation ecologies – summarized in a term such as “social ontology” – and subsequently effect a Digital Divide unique to the sector. The general forms of Digital Divide as well as those inherent to health care and biomedicine affect a number of existing (bio)ethical issues and create their own respective ones. Furthermore, some of these problems (and Digital Divides) obtain on the individual level whereas others affect entire populations. An example of individual problems would involve questions of privacy and power over data use, whereas an example of population problems would involve questions of class, race, or age as indicators for diminished access to ICTs.
Because of the constellation and arrangement of (a) various intersecting social, economical, cultural, and political factors; (b) types of problems including but not exhausted by access, motivation, competencies, usage, feasibility, and goodness claim; and (c) general and ﬁeld-speciﬁc forms, we would better speak of Digital Divides in the plural. Digital Divides account for the transformation, escalation, as well as emergence of a number of bioethical issues, some of which are illustrated or alluded to in the following paragraphs.
History And Development: Background Of The Issue
There is an “origin myth” of terminology of the Digital Divide that places it with former American Vice President Al Gore, along with President Bill Clinton, who is said to have popularized the phrase in a number of political speeches concerning the use and distribution of Information and Communication Technologies (ICTs) in the United States beginning in 1995 or 1996. However, the identiﬁcation of the original context and the meaning behind the terminology as well as the actual concept of “Digital Divide” itself have their genealogical roots in a more complex political institutional discourse. This discourse can be reconstructed from the High Performance Computing Act in 1991 to the National Telecommunications and Information Administration’s (NTIA) report titled “Falling Through the Net: A Survey of the ‘Have Nots’ in Rural and Urban America” and the language that this report deployed – a language that was probably coined by White House Aide Albert Hammond and NTIA Administrator Larry Irving in 1995. While at ﬁrst concerned with technical issues such as “bandwidth” and “broadband internet access,” popularization of the term by ofﬁcials and political luminaries was almost immediately followed by an association with class-, race-, and ethnicity based discrimination in the ﬁeld of education, i.e., computerization of the classroom, which culminated in fall of 1996 when the New York Times reported on this issue in an article about “A Nation ponders its growing Digital Divide.” The immediate social problem was, in short, constructed as a speciﬁc problem of access, i.e., whether people had access to ICTs or not (and why), which many American commentators and intellectuals identiﬁed as deeply imbued with the general problems of social justice and (in)equality.
Just as quickly researchers and scholars in the ﬁelds of social science and international politics identiﬁed that there was both a national as well as an international version of the Digital Divide, emphasizing that there was not one Divide but actually a (potentially growing) plurality of Digital Divides. Any national divide (particularly in the United States) could be initially accounted for in terms of access as a largely technological geographic problem along the somewhat traditional “center-margin” narrative: In other words, it was understood that rural areas were slower in gaining access to ICTs, speciﬁcally the Internet, than urban areas. The same was then considered to be true for the more marginalized areas of larger cities. Just as quickly, this latter issue became accounted for in social categories, i.e., along the perceived social fault lines within urban areas: poorer neighborhoods, speciﬁcally regarding school districts, that could be demarcated by social scientists in terms of ethnicity and/or race.
Internationally, the situation would also be told in terms of the “center-periphery” narrative but was immediately complicated by the social fact that the “periphery” was represented by the (at the time so-called) “Third World” or “Developing Countries,” which are more adequately referred to as the Global South. Emphasizing the importance of ICTs for future (economic) development, programs such as One Laptop per Child attempted to promote growth over time by making ICTs accessible for a large number of students. But even then, the issue is more complicated than accounted for in a simplifying formula such as “poor South, rich West”: The dividing line between richer countries (in the Global North) and poorer countries (in the Global South) is refracted by a dividing line between groups with higher and lower socioeconomic status within both the Global North and within the Global South (Ragnedda and Muschert 2013).
Another division to emerge early on was constituted by different age-groups, where it was understood at ﬁrst that younger people, growing up with ICTs, would become “native” users, whereas older generations were considered to have a harder time using ICTs. However, it also became an issue how different types of younger users were empowered by the technology, whereas others, becoming digital na¨ıves (Hargittai 2010), were not.
With the ever-expanding increase in government and political participation relying on citizens’ ICT use (e.g., for ﬁlling out forms) in general, and in particular with regard to access to health care and biomedical progress, including the reliance of so-called Big Data approaches (Floridi 2015) – raising questions of privacy – a number of ethics issues, speciﬁcally in bioethics, arose. Because this is a developing problem, and also fast paced, there is as yet still less bioethically relevant research and publication production in comparison to other ﬁelds and questions. Yet, this ﬁeld will see an increasing number of questions and proposed solutions in the coming years.
Originally and primarily the Digital Divide described the divide between those who have access to (digital) Information and Communication Technology (ICT) and those who don’t. It has, however, become apparent that there is not one divide, whether geographically (rural/urban, Global North/South) or socioeconomically (poor/rich, First/Third World), nor can the problem be reduced to the question of access.
Digital Divides emerge around numerous, intersecting social fault lines, many of them congruous with preexisting lines of inequality and injustice, including but not exhausted by poverty, age, race, and ethnicity. Cutting across these intersections are functional dimensions that generate divides, including (Dijk 2005; Eubanks 2011) but not exhausting access, competency, usage, motivation, feasibility, and goodness claims.
At ﬁrst, digital divisions negatively affected people in rural rather than urban areas, in socioeconomically less advantaged groups and areas, and people of advanced age. Initial and persisting ethical questions that emerged in terms of this kind of Digital Divide(s) focused on problems of access, which are closely connoted with distributive justice. For example: Why are some deprived of access to ICTs? Can and should this be alleviated, and if yes, what are (ethically) suitable means? Furthermore, proliferation of ICT-dependent services and access to governmental affairs had to take under consideration that not everybody has equal access. It should also be said that any introduction of ICTs can be interpreted in terms of inherent moral imperatives: ICTs make (health) services and government functions accessible to people who have not previously or only within limits enjoyed access, such as persons with reduced mobility. The introduction of an ICT point of access, such as signing up for health services, brings with it numerous assessments, which include ethical considerations among political, social, technological, and economical considerations: For example, it may be technologically possible to conduct health care insurance access only via ICTs and it may be economically indicated to offer this service only in a form using ICTs and digital information architectures. This, it seems, would make the services easily accessible for persons with impaired mobility. At the same time, it could make health care inaccessible for people who either have only reduced or no access to ICTs, who do not have the competence to use ICTs at all or do not possess the level of user sophistication required for a particular user interface, or who do not wish to use ICTs for other reasons.
Another illustrative example, regarding research ethics, involves information on clinical trials and biomedical research. An increasing number of research projects recruits volunteers online, which denies access to participation to groups on the “dark side of the Digital Divide,” but more importantly, even if other forms of recruitment are involved, important information about risks and beneﬁts might be available only online. This affects, again, persons in the Global South to a larger degree, when an increasing number of clinical trials are conducted outside of the Global North (to gain access to larger, treatment naive research populations).
Digital Na(t)ives: Offline, Online, Onlife
A main concern of bioethics is, of course, bios (life) and the medium that carries human life, i.e., the body in both its (molar and molecular) organic parts and as a whole (organism). However, if our understanding of “what human life is” and “what a human body is” changes with the advent of digital technology, then not only does bioethics face new challenges or even will be forced to change itself completely, but more importantly, the Digital Divides also create groups of people whose ethical concerns may not or no longer be covered by currently or soon to be implemented bioethics regimes. Following the widespread proliferation of digital technologies and regular Internet access, it has been noted that, on the one hand, many peoples’ lives are lived in different spheres labeled as online and ofﬂine, while on the other hand, for those who do actively use ICTs and are frequently or even constantly immersed in digital networks, the distinction online/ofﬂine has become virtually meaningless (Rey and Erin Boesel 2014). For this latter group, living can be understood, instead, as being onlife, and it has been proposed by philosophers/ethicists of information that this should be understood as the general mode of living in the near future if not already constituting our present: A respective “Onlife Manifesto” featuring the diagnosis of and political recommendations for this supposedly “digital human condition” was released by a group of scholars during an event in February 2013, organized by the European Commission’s Directorate General for Communications Networks, Content and Technology (DG Connect), which is in charge of the European Union’s Digital Agenda (Floridi 2015).
Furthermore, researchers from the ﬁelds of Science, Technology, and Society studies, media sociology, and media theory have analyzed current and prognosticated future forms of how digital media technology, online interactions, as well as types of enhancement technologies affect different materializations of the body. However, if the bios in both biomedicine and bioethics that becomes standardized is the standard of onlife, the question of what happens with those who – for whatever reason – reside on the “dark side” of a Digital Divide. This is, indeed, ﬁrst and foremost a bioethical problem itself, which can take many different forms.
For example, even if the so-called cyberbullying, which can have psychological and physical consequences, would appear to prerequisite that it happens to people who have online access, the Digital Divide in competencies would suggest that some persons have access but may not have the means to protect themselves, to seek sufﬁcient help, or are able to articulate their problem to a caregiver or expert practitioner. Herein, ﬁnding ways to deal with or even prevent so-called cyberbullying” for example, through the inclusion of protective mechanisms in online forums, or through forms of education of (adolescent) participants obtains a bioethical dimension. Another example is the question of data production from implants, such as pacemakers, or wearable medical devices. Current and future medical device development may presume that patients have both online access, competencies to navigate online information architectures, and are motivated to use these architectures. Since the production, collection, and transmission of device data, as well as some adjustments of devices to be executed by the patient herself – not all these actions can be automated – are important for diagnosis and treatment, it is possible that some patients may be unable to handle these devices properly or even receive those devices to begin with. A subsequent issue is also the question of how the sensitive data made available through these devices should be handled.
E-Government And E-Health
From Government 2.0 and E-government to Governance 3.0 and the Internet of Things, digitalization and ICTs have become a pervasive feature of the social, political, and economic architecture (Veit and Huntgeburth 2014; Pimple 2014) that affects biomedicine and health care. From signing up for health care insurance to providing and entering one’s personal and medically relevant information for an electronic health record when checking into a hospital, or even ordering one’s prescription medication, the use of digital technologies and the information architectures they afford has become nearly inevitable. But besides the issue that being on the wrong side of a Digital Divide may result in various forms of exclusion, becoming digitally included by using e-government in biomedicine and health care services, i.e., by stepping over the divide, can also have bioethically relevant consequences, since the available information architecture may not ﬁt adequately with a person’s actual life or biomedical reality. In a simple illustration, digital architectures may offer only limited choices to identify sex and gender in a patient record, which do not match with the existing variety in a patient population. However, the efﬁciency of some medical procedures, and more importantly their effective contribution to a patient’s well-being, may well depend on matching diagnoses and treatment with a patient’s actual life, body conﬁguration, and lifestyle. Along the lines of communication within the medical system (between physician’s assistants, primary physicians, specialists, lab assistants, insurance companies, etc.), mismatches can have grave consequences. Not to forget how the information provided (or missing) in these architectures concerns the questions of both distribution and security of private/personal information. In other cases, it has become clear that it is very difﬁcult to change information once it is provided digitally and distributed through a network, such as in the example of being accidentally declared dead. In these – rather grave – comedies of digital errors, people have found themselves all of a sudden on the wrong side of a Digital Divide, i.e., being no longer able to obtain certain services, precisely because they had previously depended on their digital existence; however, after being declared dead by a computer online, while being actually quite alive ofﬂine, they found it rather difﬁcult to access many (necessary) ofﬂine services. This illustrates another form of Digital Division, where it turns out that someone’s digital existence, while immaterial, can become more real in digital practice than one’s material presence.
It must, however, be stressed that identifying some biomedically/bioethcially relevant issues and overcoming those by understanding them in terms of Digital Divides can also lead to new forms of empowerment, for example, by creating new options of mobility or avenues of communication for people with physical and mental impairments, as well as for people in less accessible geographicl regions. To illustrate, persons who may not have been able to obtain access to a certain medical service or to see a particular medical specialist can do so through using the Internet. But here, again, an important question arises when accessibility of these services or related information becomes reduced to the means of use of ICTs. There are, of course, reasons for standardization of a service or means of access to that service, cost being only one of them. For example, having one standardized source of information will avoid conﬂicting information, such as when information must be distributed and shared for use between different individual experts or institutions. However, studies have also shown that a point has been reached when a substantial number of patients would trust a computer (such as a program running a diagnostic algorithm) or any digitally provided information (e.g., via an Internet search) more than they do a ﬂesh-and-blood doctor who is exercising her professional judgment.
Putting this in perspective, while online resources offer much information, which can help improve one’s health and well-being as well as promote disease prevention, they can also be misleading and cause harm. The situation may well be that those who can and do use ICTs to obtain medical information can both proﬁt in terms of health but suffer in well-being, whereas the situation is opposite for those who have less access, competency, or else motivation to make use of ICTs. The existence of Digital Divides in this case provides clues for ethically relevant questions of how ICTs can be well-balanced and used more effectively, in order to promote both health and well-being of patient populations.
Telemedicine And Digital Divisions
While all of the above section can be roughly subsumed under the rubric of e-health, another related aspect is so-called telemedicine, i.e., the use of digital technology to conduct medical practice across larger geographic distances by use of ICTs. Obviously, for both users of the technologies and recipients (patients), the problem associated with the Digital Divide applies as well as various (bio)ethical questions obtain. These can involve questions that emerge, for example, in a teleconsultation with an expert in another country working under a different ethics regime regarding and concerning the use and privacy of electronic patient records – this constitutes yet another form of Digital Divide, i.e., different legal regimes for use of digital information. It can involve other kinds of questions, for example, regarding the use of medical technologies in medical training. While some digital technologies or digital information architectures may become standard for the medical education and practice in the Global North, these may not be available in the Global South and prevent medical students from learning and practicing abroad. It may also prevent a specialist from performing surgery in another country, where some standard digital tools are not available. In other words, the speed of digitalization of health care may reinforce existing divisions (Jha et al. 2009; Joyce and Loe 2010; Coeckelbergh 2013) of class structures, urban/ rural, and/or Global North/South division in medical education and medical provision, simultaneously reinforcing existing (bio)ethical issues and creating new ones for many years to come.
Digital Cultural Health Care Capital
Speciﬁcally in terms of social justice and inequality, it is becoming evidently clear that new ways of analysis, understanding, and resolution that unite political, social, and technological perspectives are necessary (Brannigan 2012; López et al. 2011). While many hopes rest in the increasing availability of e-health in terms of both services and information, research is often inconclusive on whether or not there are pervasive and sustainable effects resulting from the increase in services, content, and access. Factors such as health literacy rather than digital literacy, it is suggested, should be taken into account, as well as other intersectional aspects including socioeconomic status. The factor of age seems to play less of a role over time, and one can perhaps even register a reversal regarding competence in ICT use with regard to privacy, namely, that older generations may appear to be more cautious in discriminating which data they make publicly available.
In terms of social theory, the problem of a Digital Divide in health care and biomedicine as a problem of justice and equality, with regard to the underlying ethics, can be reframed as a problem of distribution of forms of social capital. Both using digital media as well as services in a national health care system require a number of factors and capabilities to be present with each individual user, which can be analyzed as respective forms of capital each, digital cultural capital and cultural health care capital (Shim 2010). However, in terms of the emergence of a high-end sector of medical services based on digitalized information infrastructures, which appears to be crystallizing for wealthier, Global Northern, and/or highly educated citizens, a unique form of digital cultural health care capital currently emerges (Stingl 2014), which would result in a Digital Divide emerging exclusively in the health care sector. The moral and (bio)ethical issues obtain in terms of the distribution of this form of capital.
Empowerment And The Ethics Of Dataveillance: The Production, Distribution, And Use Of Medically Relevant Information
Health Care Services both require and produce an increasing amount of data both from individuals as well as about populations. At the same time, the increased use of so-called social media means that people provide more and more personal information freely: Information which has more or less medical (or biopolitical) relevance, speciﬁcally data collected by so-called wearables and gadgets and their integration into both health care infrastructures as well as social media, is an important privacy concern in what is understood with regard to concepts such as dataveillance. To illustrate, posting a picture on a social media forum featuring one’s skiing activities or tying the results from one’s running activities to a social media site could potentially be used to determine one’s health care insurance premiums, regarding the calculation of risk factors.
The (bio)ethical questions implicated here are legion, but privacy ranges among the most prominent ones. The Digital Divides in effect here (now and in the future) have different effects, not all of these may be negative, illustrating the emerging moral ambiguity of the “Digital Divide” (Eubanks 2011).
While some people with material access to ICTs distribute information rather carelessly online, others who may have reduced access, competencies, and/or motivation may not open sensitive biomedical information about them to abuse. At the same time, they may, of course, be deprived from access to some (information about) health services. But even users of social media face and engage ethical questions of privacy in different ways, according to a Digital Divide: Where different social media offer particular privacy ﬁlters, these require different levels of competence and motivation to use. The same holds true for participation in research projects involving, for example, biobanks, where personal information is correlated with biomaterials, such as genetic information. Therefore, an ongoing debate is the question of whether privacy can and should be guaranteed through a “Right to be Forgotten” (Floridi 2015).
With the increase in research demands for “Big Data” approaches for improving population health on the one hand and data requirements for the increase in personalized medicine on the other, people need to have access to ICTs that can be used to contribute, produce, edit, and retract personal and medically relevant information. But they also need to be empowered and enabled to obtain, understand, and execute this kind of control. The uneven distribution of access, power, and ability to do so constituted in terms of a Digital Divide and the ethical issues related to it present an important but still novel and rapidly changing challenge.
A fast-developing challenge can be associated with the notion of the Internet of Things or the concept of ambient assistive technologies. An increasing number of devices in our immediate environment become simultaneously integrated with one another and the ways in which we live our everyday lives. Many of these have biomedical functions, biomedical consequences, or pertain more or less explicitly to a biomedical context. To be empowered and enabled to make use of these devices, to understand possible consequences, and to use good judgment in their deployment, one is required to have an understanding of the underlying digital information architecture. Secondly, since these technologies often involve robotic types of machinery, it has been proposed that the Digital Divide must be complemented with a concept of Robotic Divide, given that both technologies become simultaneously and coproductively integrated with our social lives, but also feature interdependencies which lead to the reproduction of patterns of inequality. At the same time, both Divides have distinct features of their own, which become only apparent in contrast with one another.
Asymmetry Of Material Effects
An often neglected but ethically and politically relevant effect of the Digital Divide between the Global North and South can be uncovered in the problem of the materiality of Digital Culture. While digitalization of social life in general and health care and biomedicine in particular requires ICTs, the material basis of ICTs (such as computers, smartphones, wearable’s, etc.) reveals two sensitive issues: extraction and trash.
The material objects that quite literally are ICTs require rare materials (such as coltan), which are often found and mined in countries of the Global South and implicated in local wars, poverty, corruption, and health problems (associated with mining). After use in the Global North, many of the devices, which are now toxic waste, ﬁnd their way back to nations in the Global South, where they are an environmental and biomedical hazard for local populations. This can be considered a material Digital Divide.
The Digital Divides present a set of emerging, continuing, and open-ended problems.
Regarding diagnosis, treatment, and outcomes of health care and biomedical interventions for a signiﬁcant number of clinical conditions, geographic, generational, racial, and ethnic disparities have been recognized. At the same time, the pervasive deployment of digital information and communication technologies (ICTs) has changed contemporary societies at various levels. In the health care and biomedical sectors, these have resulted in an acceleration of health information technology (HIT) implementation, which oftentimes, while affecting some countries more than others, widens preexisting social gaps.
One main dividing line is between the Global North and the Global South at large, while further social inequality fault lines run within nations in the Global North than within the Global South. Within the European Union, many problems are as yet less visible than in the United States, somewhat paradoxically due to the large variety of national health care systems and their lack of harmonization in the European Union. The United States (Lustria et al. 2011), with its most recent health care reform legislation known as “Affordable Care Act” or “Obamacare,” presents as the ideal-typical case, since the reform already has – and the recently announced “Precision Medicine” agenda will accelerate this development – led to multiple provisions for collecting and using health information that are intended to improve and monitor quality and efﬁciency in health care. While these measures hold potentials and have, albeit selectively, proved to improve individual care, population health, and cost efﬁciency, as well as patient safety, some preexisting disparities remain and are even intensiﬁed, while new ones arise. One more easily rectiﬁable cause, as some research has shown, is the uneven and generally low level of implementation, for example, regarding innovations in electronic health records or (chronic) disease management (Joyce and Loe 2010), which require digital participation. However, several factors – access, competency, usage, motivation, feasibility, goodness claim, among others – constrain digital participation in terms of the unequal distribution of different forms of social capital and can be summarized under the term Digital Divide(s). Therein, Digital Divides act as generators of diverse (bio)ethical problems and of unevenness along the social fault lines of the Divide(s), from fair deployment of and access to medical services to control over privacy of sensitive medical information. The boundaries of Digital Divide(s) are – from an ethical point of view – not clear cut and are becoming increasingly ambiguous, ﬂuid, and blurred – consequently, they are becoming an increasingly exciting, challenging, and contentious ﬁeld of bioethical inquiry.
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