Patients The most notorious of these unethical experiments

Patients
in a hospital and participants in a clinical trial or medical experiment are
linked by a common factor – medical data. Medical data refer to the
observations on patients by their health care givers, which can also be
referred to as medical records and the observations on participants in a
clinical trial by the research scientist or medical doctor, also known as
clinical research data.

Medical
data including clinical data from clinical trials are a type of sensitive data1
with specific laws that guide the process of acquiring such data. However, such
medical data have in both the distant and recent past been acquired illegally
by criminal offenders and unethically by unscrupulous scientists who engage in
inhumane medical experiments.

Since
medical records also contain information on the non-medical aspect of the
patients’ lives, it is a gold mine for criminals who require access to large
pools of personal information on individuals. In 2014, Shaida Bandali, a
Canadian who worked as a clerk in a hospital, stole and sold more than a
thousand maternity ward records to information brokers for between $1 – $2.75
each.2  According to the U.S. Department of Health
and Human Services’ Office for Civil Rights, more than thirty breaches of
health-care data involving five hundred or more people have already been
reported in 2016.3
The stolen medical records are used to commit a plethora of crimes such as
identity fraud, tax fraud, to blackmail patients and extort money from
hospitals. Thus, the proliferation of illegal uses of illegally sourced medical
records has become a ubiquitous menace which targets medical institutions and
make patients vulnerable to criminal oppression.

On
the flip side, there have been in recent times, agitations by renowned medical
doctors and researchers for the use of clinical research data sourced from
unethical clinical trials and experiments. The most notorious of these
unethical experiments is the Nazi experiments. The Nazi experiments were brutal
medical experiments performed upon helpless concentration camp inmates which
were characterized by several shocking features: (1) persons were forced to
become subjects in very dangerous studies against their will; (2) nearly all
subjects endured incredible suffering, mutilation, and indescribable pain; and
(3) the experiments often were deliberately designed to terminate in a fatal
outcome for their victims4. These
experiments were meticulously recorded, and the records still exist. The basis
for the recent agitations is that it is believed that the clinical research
data may hold valuable information that could benefit people who suffer from
diseases today,5
and accelerate research on fields such as vaccines, treatment of hypothermia6
and regulation of human exposure to poisonous gases like phosgene7.
For instance, Doctor Robert Pozos, the Director of the Hypothermia Laboratory
at the University of Minnesota of Medicine at Duluth believes that many of the
existing rewarming techniques that have been used thus far for hypothermia
patients lack a certain amount of critical scientific thinking.8 He
insists that the data on freezing experiments recorded by Nazi doctor, Sigmund
Rascher would greatly improve hypothermia patients’ chances of survival.9
These give rise to the need for consideration of ethical issues in the use of
clinical research data obtained from unethical sources.   

1.2.  
STATEMENT
OF THE PROBLEM

The
incidence of patients’ medical records being stolen and sold by staff, or
hijacked from medical institutions by cybercriminals is on the rise as evidenced
by the media which is rife with news of such occurrences. This creates cause
for an examination of patients’ rights being violated as a result, and also the
possible criminal use of the medical record.

There
is, also, the question to be examined of whether the unethical source of some
clinical research data is enough to out rightly and unequivocally restrict
their usage, when using such data has the potential to save lives.

These
are issues that raise concern generally especially in jurisdictions that are technologically
advanced in the science of medical record-keeping and societies which have been
exposed to the inherent horrors associated with unethical clinical research
respectively. As such, the preoccupation with the present work is two-fold. On
one hand, the preoccupation with the present work is to state the rights of
patients with regards to their medical records, the resultant violation of
these rights when the patients’ medical records are illegally obtained, and the
use of the illegally obtained medical records for activities that are equally
illegal. On the other hand, though, another preoccupation with the present work
is equally to identify factors that make clinical research data unethical to
use, and whether such unethicalness should be set aside in the instance where potential
exists for the sound use of the unethically acquired clinical research data.

While,
in proportion to other jurisdictions such as England and the United States of
America, the Nigerian society has not encountered great exposure to the issues
arising from the illegally and unethically acquired medical data, there still
lies the need to address the issues. If the issues arising from the illegal
acquisition of medical records remain unaddressed, Nigerian patients as well as
the Nigerian medical community may be exposed to dire medical record security
breaches. They may also eventually be greatly exposed to threats from hackers
and cyber criminals who may obtain their records with the intent to use them illegally.
With the view in mind that the Nigerian medical community is evolving to meet
standards already established in overseas countries, addressing these issues
now will serve a prophylactic purpose by out rightly preventing or vastly
reducing the instances of patients’ medical records being illegally acquired,
both now and particularly in the nearest future. Furthermore, in the instance
where Nigerian medical ethicists arise to debate on the ethicalness of the use
of unethically acquired clinical research data, recourse may be had to the
arguments of foreign ethicists for and against the use of the data which is
also a preoccupation in the present work.

In
desiring to address these issues, it is observed that Nigeria has the legal framework,
in the form of its National Health Act
2014 which provides for the protection of patients’ medical records from
unauthorised access, and the Rules of Professional Conduct for Medical and
Dental Practitioners created by the Medical and Dental Practitioners Council of
Nigeria by virtue of the authority conferred on it by the Medical and Dental Practitioners Act 1988 which provides guidelines
for ethical clinical research to be conducted, and by implication, clinical
research data, to be obtained ethically. The adequacy of these legislations in
the eventuality of the Nigerian society being exposed to a greater proportion
of the problems which this work undertakes to address is yet to be ascertained.

1 Australian
National Data Services, ‘Medical and Health Data’
accessed 15 August 2017

2 Marco Chown
Oved, ‘Hospital Clerk Pleads Guilty To Stealing, Selling Patients Records’ (The Star.com, 21 August 2015)

accessed 24 July 2017

 

3 Jenifer
Schlesinger, Andrea Day, ‘Dark Web is Fertile Ground For Stolen Medical
Records’ (CNBC, 11 March 2016)
accessed 18 September 2017

4 Baruch Cohen. ‘The
Ethics of Using Medical Data from Nazi Experiments’, J Halacha Contemporary Society, 19,(1990) 103-126.

5 Sarah
Wilson, ‘The Nazi Research Data: Should We Use It?’

accessed 18 September 2017

6 A medical condition in
which the body temperature is much lower than normal

7 A poisonous gas that
was used as a chemical weapon during World War 1

8 Cohen, op.cit

9 Ibid

Written by