Introduction
Ethics in Human-Computer Interaction (HCI) covers a wide range of topics including:
human welfare, ownership and property, privacy, freedom from bias, universal usability,
trust, autonomy, informed consent, and accountability, among others [1]. Like HCI, biomedical informatics research and practice is deeply concerned with
the ethical implications of technology design and use. The code of professional and
ethical conduct of the American Medical Informatics Associaion (AMIA), revised in
2018, highlights topics such as informed use and control of data by patients, security
and privacy, respect for human participants in research, and awareness of social or
public health implications as aspects of ethical behavior [2]. Although the scope of ethics in these fields can be broadly conceptualized as described
above, certain key themes emerge as prevalent within the literature during any given
time period. To provide an overview of topics at the intersection of biomedical informatics,
HCI and ethics, we explored literature published in years 2017-2019.
Methods
We surveyed recent literature to provide an overview of key themes at the intersection
of biomedical informatics, HCI, and ethics. We started with an examination of recent
publications, which were used to identify search terms for both HCI and ethics. The
HCI search terms included “human-computer interaction” and variants along with additional
terms discussing interfaces, displays, user-centered design, and virtual systems.
Ethics search terms included topics such as bias, bioethics, security, confidentiality,
privacy, disabilities, consent, legislation, autonomy, personhood, privacy, racism,
vulnerable populations, underserved, and related variants. The HCI search terms were
combined with the ethics terms in conjunctive searches, with the addition of a temporal
term restricting results to papers published between January 1, 2017 and December
31, 2019 (to include electronic publications ahead of print). Additional articles
were identified through manual review of recent publications in medical informatics
journals, recommendations from colleagues, and review of curated collections including
James Cimino’s 2019 Year-in-Review presentation at AMIA 2019 [3], the Journal of Medical Internet Research’s e-collection “Ethics, Privacy, and Legal
Issues” for the years 2017 to 2019 [4], the special issue of the Journal of American Medical Informatics Association (JAMIA)
on Health Informatics and Health Equity published in August-September 2019 [5], and through further manual searches and review of citations. Between October and
December 2019, we engaged in an ongoing dialogue about this literature both with each
other and with our informatics colleagues. Our reading of the literature combined
with these dialogues led to the identification of overarching themes, which we present
in the synthesis below.
Results
Three broad topics emerged from our reading of and dialogue about the last three years
of work at the intersection of biomedical informatics, HCI, and ethics. These themes
can be characterized as 1) Systems in Use, 2) System Design, and the overlapping but
distinct topic of tools, and 3) Responsible conduct of research. Under our discussion
of each of these themes, we highlight the breath of relevant literature, giving particular
attention to the range of ethical considerations most prominently discussed in the
literature.
1) Systems in Use
Studies of the implications of systems in use draw on experience with deployed tools
to identify ethical issues generally not anticipated prior to system development or
deployment. Using both quantitative and qualitative analysis methods, these studies
attempt to look back at notable incidents, failures, or simply a body of experiences
with a system in situ, in the hope of identifying issues or perspectives that might help avoid future difficulties.
Clinical Informatics
Potentially adverse impacts of poor usability of electronic health records (EHRs)
continue to be a concern, particularly with respect to patient safety. Consistent
with earlier efforts [6]
[7]
[8]
[9], examinations of patient safety reports continue to find evidence of a strong impact
of usability problems on EHR safety [10]
[11]. A laboratory study of two commonly-used EHRs in four healthcare systems found wide
variability in task completion time, required clicks, and error rates (ranging from
0% to 50% for various tasks), even though the products had been certified by accreditation
authorities [12]. Overly burdensome and often inconsistent EHR documentation practices have also
been discussed as a potential source of physician stress and safety risks [13]
[14]
[15]. Whether or not regulatory frameworks for EHRs might be sufficiently mature to address
usability and safety concerns was explored by comparing the Office of the National
Coordinator’s (ONC) policies for EHRs with analogous policies issued by the Federal
Drug Administration (FDA) and Federal Aviation Administration (FAA). FDA and FAA policies
were found to be more robust and prescriptive than those of the ONC [16]. Some observers have called for regulatory measures, including national tracking
of EHR usability and safety problems, publication of design standards, development
of standard usability and safety measurement scenarios [17], increased transparency in researching and sharing EHR usability and safety issues
[18], and recommitment to shared responsibility in improving EHR use [19]
[20]
[21].
Usability difficulties in related clinical systems may influence the reliability of
some of the data used to understand potential safety hazards associated with EHR use.
A systematic review of 48 patient safety event reporting tools identified usability
issues such as omission of input validation facilities and hierarchical data layout
as frequently found shortcomings [22]. Although the authors do not speculate as to the exact nature and magnitude of the
impact of these difficulties, it seems possible that usability problems might lead
to inaccurate and incomplete reports, and subsequently to undercounting safety events.
Personal Health Informatics: PHRs, Portals, and Personal Health Information Management
Patient portals bring a different set of challenges, particularly since usability
or interaction design shortcomings may effectively disenfranchise patients who find
the tools difficult to use or even inaccessible [23]. Encouragement from providers, perceived possibilities of greater access to health
information, and improved communication can facilitate portal use, while lack of awareness,
lack of training, and privacy/security concerns present barriers [24], although others have noted that focusing on individual concerns might obscure systemic
inequities that discourage use [25]. However, experience with the OpenNotes platform suggests that direct sharing of
notes through patient portals might be beneficial. A survey of almost 30,000 OpenNotes
users from three health care systems found that patients found notes helpful for managing
their health, with relatively low rates of confusion and substantial benefits among
potentially vulnerable populations, including those with lower education levels and
non-native English speakers [26].
Social Media and Online Communities
The majority of articles focused on ethical concerns at the intersection of social
media and biomedical informatics published during the review period focus on the ethical
conduct of research on and through these platforms [27]
[28]
[29]
[30]
[31]
[32]
[33], including consideration for particularly sensitive cases in mental health [34]
[35]. A few articles discuss the ethical issues associated with direct use of social
media for health by patients and providers as they relate to HCI [36]
[37]. Social media systems often do not clearly indicate the extent to which healthcare
providers access and attend to information posted by patients on social media platforms.
As a result, patients may post information that they would otherwise not want their
provider to see without realizing that a provider may be able to access this information
[31]
[36]. Conversely, patients may post information believing that a health-care provider
both has access to and will respond to the post. Both cases underscore the need for
designs that clearly signal both potential and actual consumption of and responsiveness
to posted information by healthcare providers and other individuals. Another key issue
relates to information interpretation by patients and providers, who face challenges
in interpreting comprehensiveness, accuracy, completeness, and authenticity of information
posted on social media platforms [36]
[37]. The presence of both missing information and misinformation generated by both individuals
and automated bots emphasizes the need to design systems that use clear communication
of potential risks to mitigate adverse consequences [38]
[39]. The use of social media for targeted advertising, particularly for sensitive topics
such as mental health services, presents additional questions as to which applications
of these data are considered to be acceptable [40]. A final concern relates to patient understanding of privacy risks as communicated
by complex, evolving, and opaque terms and conditions on social media platforms [36]
[39]. There is significant opportunity for deeper understanding and intervention from
both the HCI and biomedical informatics communities across these areas of concern.
Mobile
Mobile health apps present several ethical concerns. Prominent among these concerns
are privacy and security, particularly when personal health data is involved [41]
[42]
[43]
[44]
[45]. Examinations of these questions from the perspectives of specific sub-groups, such
as men who have sex with men [46] or under-represented ethnic groups [47] emphasize the importance of understanding the needs of specific populations. There
is also a need to consider privacy and security as it relates to unintended users.
For example, bystanders of an individual using an app intended to capture illicit
drug use may inadvertently, without their consent, share elements such as their location,
voice, topic of conversation, and other data elements [48].
Clinical applications present similar ethical issues. Although initial data from a
small survey suggests that patients might be willing to share data from their devices
for use in mental health assessment [49], the use of mobile apps to directly provide psychotherapy and more general mental
health support [50] raises concerns about accountability and privacy as well as the need for such systems
to explicitly acknowledge the limitations of the source of advice [51]. In an echo of some of the earliest discussions of concerns over the impact of artificial
intelligence [52]
[53], the emergence of automated chatbot therapy apps has led to calls for ethical standards
concerning privacy and the need for disclosure of the automated nature of the tools
[54]. The use of mobile devices for communication of other health-related information,
such as medication descriptions, have similarly raised concerns about effective communication,
usability, and appropriate regulation [55].
2) Systems Design
Projects in this category differ from discussions of systems in use in that they involve
development of novel systems design with the explicit goal of meeting previously unfulfilled
ethical considerations. To reach this goal, these projects may be associated with
qualitative up-front efforts aimed at understanding relevant needs and preferences
and developing designs to account for them.
Perhaps unsurprisingly, attempts to address ethical concerns through novel designs
continue to be challenged by the complexities of clinical users and contexts. Preliminary
studies of an EHR system that uses pixelation to protect privacy by hiding sensitive
information found the design might have improved understanding of privacy concerns.
However, difficulties with the inconvenience of revealing the information and the
possibility of missing important information raised concerns among potential users
[56]. Similarly, a proposed privacy protection design has provided patients with facilities
for redacting sensitive content from EHR documents. Although preliminary focus group
evaluations found that users had appropriate mental models, several novel requirements
were identified, including the need for establishment of trust and clear communication
of the handling of redacted data [57].
The importance of considering the perspectives of distinct patient populations is
seen in a range of efforts, including preliminary inquiries into potential designs
for managing opioid abuse risk in military settings [58], teen smoking prevention tools [59], electronic system decision aids for depression [60], apps for menstrual tracking [61], personal health records for young adults leaving foster care [62], and identification of research areas for informatics support of families experiencing
challenges of hospitalization and subsequent care [63]. A proposed clinical trial of the potential use of computer-delivered advice for
encouraging physical activity in underserved populations [64] illustrates issues at the intersection of trust, inclusivity, and HCI, as different
groups may have different responses to these automated agents. Although social media
may play a role, as in a project using analysis of blog posts to understand the sentiments
and attitudes of individuals undergoing gender transitions [65], in-depth work with individuals and groups representing these diverse perspectives
is likely to be critical to both successful design and responsible use of informatics
tools.
3) Research Conduct
Efforts in this category focus on the development of interactive tools in the support
of appropriate conduct of research activities, primarily focusing on outreach and
consent to participate in research. As identifying potential participants and helping
them become better-informed about the implications of their participation are key
components of ethical research conduct, questions of trust and related issues of fairness
are not far behind.
Consent, Trust, and Participant Engagement
Tablet, mobile, or portal-based systems present new opportunities for effectively
providing educational materials necessary for informed patient and research study
consent. Qualitative studies assessing user needs and preferences have suggested that
these tools might effectively address user concerns and potentially increase participation
among under-represented groups [66]
[67]. However, evaluations have not always found clear wins, with some studies failing
to see improvements associated with the use of e-consent [68], and others finding difficulties with complex content [69]. Other efforts have explored interface designs intended to slow users down in the
hopes of increasing comprehension [70], and the use of learning theory to design consent content [71]. A review of research on consent processes for research mediated by mobile apps
found a range of practices, including some not found in traditional consent, such
as assessments of consent understanding and the use of finger-drawn singatures [72]. The broad range of delivery methods, study designs, and assessments used in these
studies suggests a need for further work to better understand which approaches might
work best in which contexts.
Recruiting
Informatics approaches can contribute to the reduction of bias in research studies,
as seen in a study that found that patients excluded from a medical device trial due
to lack of computer or internet access were among those who might have been most in
need of the intervention [73]. Changes to recruiting practices might address some of the imbalances in research
participation, as seen in a large trial involving the use of a patient portal to invite
participation in a research recruitment registry. Portal invitations led to appropriate
representation for women, but differences for Black males, Hispanics, and Asians persisted
[74]. A similar approach aimed at urban African-Americans embedded recruiting information
in personalized lists of health-related community resources, with encouraging preliminary
results, although overall recruitment rates remained low [75]. The PRIDE study, which used in-depth efforts from advisory panels and outreach
ambassadors to guide the design of a research platform for a cohort study of sexual
and gender minority people [76], provides an example of how a commitment toward understanding and working with underserved
or otherwise historically marginalized communities on both the explication of information
needs and subsequent design responsive to such needs are critical to successful engagement
in research.
Recruitment through social media is also a possibility. A survey of Twitter users
and participants on a crowdsourcing platform found that most users might not object
to monitoring Twitter content to find study participants, but variations in preferences
suggest a need for caution [77]. Similar concerns informed the development of a privacy-by-design framework for
using social-media to identify study participants [31].
Conclusions
Our reading of the last three years of scholarship at the intersection of biomedical
informatics, HCI, and ethics demonstrates an active dialogue about the issues. The
value placed upon such discussions is exemplified by the robust collection of articles
identified through this overview and published in over a dozen journals, including
special issues on the topic in both JAMIA and the Journal of Medical Internet Research
(JMIR). The three themes identified provide a useful starting point for considering
the breadth of work at this intersection, namely systems in use, system design, and
research conduct. The publications of the last several years emphasize the need for
future scholarship particularly in mobile health and social media, inclusivity, and
e-consent. As informatics applications expand into emergent domains, so too will the
range of ethical considerations that the field will need to address. For example,
new questions related to privacy, welfare, and inclusivity, among others, will result
from the rise of precision medicine and citizen science [78]. Similarly, the rapid rise of mobile tracking as a mechanism for public health surveillance
and telemedicine in the wake of the COVID-19 pandemic will necessitate additional
debates at the intersection of biomedical informatics, HCI, and ethics [79]
[80]. Given this dynamic landscape, there will be an ongoing need not only to engage
in ethical discussions but to synthesize and present them in ways that are accessible
to the biomedical informatics community.
