Personal health monitoring: ethical considerations for stakeholders
| Pages | 156-173 |
| Date | 12 August 2013 |
| DOI | https://doi.org/10.1108/JICES-06-2013-0015 |
| Published date | 12 August 2013 |
| Author | Anders Nordgren |
| Subject Matter | Information & knowledge management,Information management & governance |
Personal health monitoring:
ethical considerations for
stakeholders
Anders Nordgren
Linko
¨ping University, Linko
¨ping, Sweden
Abstract
Purpose – This paper has three purposes: to identify and discuss values that should be promoted
and respected in personal health monitoring, to formulate an ethical checklist that can be used by
stakeholders, and to construct an ethical matrix that can be used for identifying values, among those in
the ethical checklist, that are particularly important to various stakeholders.
Design/methodology/approach – On the basis of values that empirical studies have found
important to various stakeholders in personal health monitoring, the author constructs an ethical
checklist and an ethical matrix. The author carries out a brief conceptual analysis and discusses the
implications.
Findings – The ethical checklist consists of three types of values: practical values that a technical
product in personal health monitoring must have, quality of life values to be promoted by the
development and use of the product, and moral values to be respected in this development and use. To
give guidance in practice, the values in the checklist must be interpreted and balanced. The ethical
matrix consists of the values in the checklist and a number of stakeholders.
Originality/value – The overall ambition is to suggest a way of categorizing values that can be
useful for stakeholders in personal health monitoring. In order to achieve this, the study takes
empirical studies as a starting-point and includes a conceptual analysis. This means that the proposals
are founded on practice rather than mere abstract thinking, and this improves its usability.
Keywords Justice, Ethics,Privacy, Autonomy, Healthcareambient systems, Patient-centricapproach
Paper type Research paper
Introduction
Personal health monitoring is an increasingly important part of today’s health care
and social care. Examples of technologies for personal health monitoring are devices
for medication assistance, sensors for monitoring heart failure, sensors for fall
detection, night vision cameras and mobile safety alarms, but also technologies for
social contact such as adjusted internet that connects patients with relatives or care
professionals.
This paper deals with ethical aspects of personal health monitoring. The purpose is
threefold:
(1) to identify and discuss values that should be promoted and respected in
personal health monitoring;
(2) to formulate an ethical checklist that can be used by stakeholders in the
development and use of personal health monitoring; and
The current issue and full text archive of this journal is available at
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Research for this paper was funded by the European Commission (the project “Personalized
Health Monitoring – Ethics” (PHM-Ethics); contract number 230602) and New Tools for Health
(VINNOVA, Sweden)[1].
Received 19 June 2013
Revised 20 September 2013
Accepted 20 September 2013
Journal of Information,
Communication and Ethics in Society
Vol. 11 No. 3, 2013
pp. 156-173
qEmerald Group Publishing Limited
1477-996X
DOI 10.1108/JICES-06-2013-0015
JICES
11,3
156
(3) to construct an ethical matrix that includes the values of the ethical checklist as
well as various stakeholders and that can be used descriptively or normatively
in ethical technology assessment of personal health monitoring.
Values to promote and respect in personal health monitoring
What values are to be promotedin personal health monitoring? What are thetechnology
developers’and patients’ views on this? I haveearlier conducted an empiricalstudy of the
web-advertisements of companies offeri ng products and services for personal
health monitoring. The practical advantages stressed on the web sites are, for example,
measurement of various physiological parameters, reminder for patients to take their
medication,reduced number of unnecessary visitsby nurses, emergency room visits and
hospital stays, opportunity to stay longer at home, improvement of health service
efficiency, and lowered costs. The companies also use prestige words representing
advantages of particularly high value such as improved health and quality of life,
independence, safety, and social contact (Nordgren, 2012b, pp. 104-111).
Empirical studies of elderly peoples’ and patients’ perceptions of values they expect
to be realised in personal health monitoring indicate that these are in line with those
found on the companies’ web sites. In addition to health, including the prevention of
future medical conditions, they highlight values such as independence, safety, and
social contact (Hanson et al., 2007, pp. 198-199; Esse
´n, 2008, pp. 132-133; Harrefors et al.,
2010, pp. 1526-1529).
Given these findings, it seems reasonable to take these values into consideration
when reflecting on ethical aspects of personal health monitoring. These values do not,
as such, seem controversial. What could be controversial is rather how and to what
extent they can and should be realised by means of personal health monitoring. Let me
call these values – heal th, independence, safety and social contact – “quality of life
values” (see further below).
In order to be able to promote these quality of life values, technical products for
personal health monitoring must fulfill certain technical and economic requirements
such as reliability, ease of use and affordable price. These practical values have
also been targets of empirical study (Marzegalli et al., 2008; Charness et al., 2013;
Henderson et al., 2013).
However, thereis a also deeper question about what moralvalues should be respected
in developing and using technologies for personal health monitoring. Health care
legislations, conventions and declarations may give some direction. For example, the
Health Care Act of my own country, Sweden, stresses respect for the autonomy of
patients, respect for their privacy (“integritet”), and justice in the distribution of health
care resources (Ha
¨lso-och sjukva
˚rdslagen 1982:763 (1997:142), paragraph 2). Moreover,
there is a longstanding discussion in medical ethics to draw upon. One influential
approach is the ethical framework proposed by Tom Beauchamp and James Childress.
They stress four principles, namely respect for autonomy, beneficence, non-maleficence
and justice (Beauchamp and Childress, 2009, pp. 12-13; Gillon, 1994, p. 184).
In discussing moral values to be respected in developing and using technologies for
personal health monitoring, I will focus on the three values of the Swedish Health Care
Act. Two of these – autonomy and justice – are found among the principles proposed by
Beauchamp and Childress. The third value – privacy – I regard as a moral value of its
own, not as a value derived from autonomy, as Beauchamp and Childress (2009, p. 298)
Personal
health
monitoring
157
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