Raymala Raman, [26/6/2022 3:21 PM]

No (although there is not a consensus among scientists or lawyers).

First, unethical research should, to the best of our ability, be banned.

Second, persons who do unethical research have an agenda (eg, Nazi doctors like Mengele, Rüdin,
others used data to bolster their a priori assumptions re: race and the superiority of "Aryans"--they
were not interested in proving or not proving the null hypothesis).

Third, how generalizeable is data on tortured incarcerated persecuted hopeless concentration camp
prisoners to the general population? It is not.

So unethical research by biased "researchers" on a persecuted subgroup is wrong and confounded

Raymala Raman, [26/6/2022 3:22 PM]

I fully agree with Lewis here. He and I have had quite a lot of dialogue over the past few days. To
begin with, I was unsure about whether medical data collected under the most brutal circumstances
might help innocents in extreme circumstances, such as civilians who fall overboard at sea.

But consider the partial submersion in icy water of Jewish prisoners in Dachau concentration camp in
order to learn (if that is the right word here!) how to maximize survival among downed German
aircrew over water. Fit airmen and frightened, starving prisoners have very different physiologies.

Ergo, data on the effects of this wicked deed can hardly be extrapolated to other populations. Paul

Raymala Raman, [26/6/2022 3:24 PM]

An extremely thought provoking question and one, I am guessing, is more to start a debate than get
an actual definitive answer, because I suspect there is no one answer. This is not my area, but I
understand that there are drugs we use today that were developed by means of very questionable
'research'. Does that mean we should stop using them - probably, but who would be strong enough
to resist using them if it meant saving their own life? Equally, some would argue that such
questionable research is still being carried on, but now on animals.

Raymala Raman, [26/6/2022 3:25 PM]

You raise important issues Tony. This is not an easy decision. For all that, I find that Lewis´s remarks
are convincing. Paul

PS. How one might react if a seriously ill human being desperately needed treatment that had
originally been based on data obtained from cruel experiments is an issue of individual conscience.
Raymala Raman, [26/6/2022 3:32 PM]

Well, interesting but impossible to say yes or no.

health is a good example, and I am a good example. I am supposed to be a bipolar. A certain doctor
or professor So is considered to be the first scientist to use lithium as a regulator of this kind of
psychiatric disorder. I don't know if bipolar disorder can be found in mouse."model" . But at a certain
point of the supposed progress of medical art, there is the necessity of experimenting medicine
drugs on human beings.

What is surely condamnable is to choose some people because of religious beliefs or supposed
racial identity. A random sample is surely preferable. Anyway, what we say in French is :

"science sans conscience n'est que ruine de l'âme"

approximately :

science without a clear notion of what we are as human beings is doomed to be a disaster for our
soul" (without any religious connotation)

Raymala Raman, [26/6/2022 3:32 PM]

The Belmont Report is a critical document for those involved in research. However, the report is also
applicable to clinical practice. The primary purpose of the Belmont Report is to protect the rights of
all research subjects or participants. The Belmont Report also serves as an ethical framework for
research. There are 3 major components: (1) respect for persons, (2) beneficence, and (3) justice.
This article will review these principles and show how they can be applied to the clinical as well as
the research setting and address some concerns for the 21st century.
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Home Archives Vol. 7 (2021) Op-Eds

When Research Serves Good Purposes

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Published

Apr 8, 2021

DOI https://doi.org/10.52214/vib.v7i.8002

Main Article Content

Kenneth Kirkwood

Photo by Scott Graham on Unsplash

It is a classic ethical dilemma to have something of potential value that comes at a tremendous cost
to others.[1] To access the good, you must have the bad. For decision-makers, it becomes an
onerous task of deciding if they would deny the world something 'good' or create something bad to
achieve the good. Weighing the two possible outcomes has proven timelessly frustrating to those
well-intentioned people who wish to "do the right thing." Medical research has yielded data derived
from unethical situations wherein research participants were vulnerable and whose consent was
questionable, absent, or not sought. The rules currently governing research allow for broad use of
ill-gotten data. While providing a deterrent to unethical research practices, stricter rules still would
allow some use of data. This paper argues the permissibility depends primarily on the nature of the
unethical data collection and the potential benefits.

ANALYSIS

The American Medical Association (AMA) places additional obligations on researchers who utilize
data obtained from unethical experiments. The Code of Medical Ethics Opinion 7.2.2[2] recommends
that researchers and peer reviewers should take the following steps to best handle such data:

(a) Disclose that the data derived from studies do not meet contemporary standards for the
ethical conduct of research.

(b) Clearly describe and acknowledge the unethical nature of the experiment(s) from which the
data are derived.

(c) Provide ethically compelling reasons for which the data are being released or cited, such as the
need to save human lives when no other relevant data are available.

(d) Pay respect to those who were the victims of the unethical experimentation.

The AMA does not go far enough to protect past research victims or prevent future research ethics
violations. Three additional considerations beyond the limitations offered by the APA are needed for
ethical use of the data: who collected the data and ran the experiments, who would benefit from the
data, and how much additional benefit would ensue from its use. A specific focus on data generated
by Nazis whose research subjects were imprisoned in concentration camps highlights the ethical
challenge.
l. Who Created the Data?

Medical research generated during the Holocaust subjected innocent people to torture in the
name of science. Arguments can be made against the use of such data on the grounds that using the
data represents a further indignity to those who suffered such horrific conditions and persecution.
However, some of the data that emerged out of the Holocaust was not created by oppressors at the
expense of the oppressed. Rather it grew out of the horrific conditions and was amassed by fellow
prisoners. One prominent example is Myron Winick's work on hunger and disease, which edited the
detailed records of Jewish physicians working in the Warsaw Ghetto, who traced the progression of
starvation in stunning detail.[3]

One obvious difference is that the Jewish physicians were not responsible for the conditions
under which the data was gathered. But if we ask ourselves if their work represents a further
indignity to those who had their starvation documented, the answer is not so clear. In this way, it is
important to determine the explicit purpose of medical research as opposed to data generation as
one aspect of the violation. To record the medical symptoms of a 'subject' who is, as you are, a
victim of the circumstances with no other recourse, is different in kind from 'subjecting' a person to
the condition in the first instance. Therefore, an analysis of the person doing the research provides
an added limitation on using research performed by an oppressor yet allows some lenience for
research by fellow victims. Research performed by oppressors must have a significantly higher
marginal benefit over other available or collectable data.

ll. Who Gains from the Data? Is it of Sufficient Benefit? (An effort to expand part C of the AMA
unethical experimentation rules)

In the spirit of contrition and commitment to the truth of historical ignominies, such as the
Holocaust, the AMA created these best practices for physicians dealing with any ill-gotten data. In
the case of the Holocaust, the period that has passed since 1945 would suggest that most, if not all,
perpetrators of this research are deceased. However, prior to using data, modern researchers should
ensure that there is no gain to be had on the part of the families of the perpetrators. When a large
organization can offer mea culpa and seemingly genuine pledges toward reconciliation while still
enjoying the advantages gained over others by virtue of their wrongdoing, it undermines sincerity,
creates an incentive for more researchers to engage in unethical data collection, and would be an
injustice to the relatives of victims. This matter may become more relevant going forward as private
ownership and patents could play a role in sustaining the fiscal or reputational benefits to those who
conduct science devoid of ethics.

The Belmont Report lays out a risk-benefit equation which states that research that posed
significant risks to the participants must also carry sufficient benefits to those who take risks. This
element suggests two aspects that speak to the "justness" of a research project: First, a balance
must be struck between potential harms and potential benefits; second, those who took risks must
not be precluded from accessing the benefits of the products a successful trial would create.[4]
 Researchers must evaluate whether the data is both scientifically valid and usable from a
methodological point of view, but also if what the use of the data promises is sufficiently compelling
to benefit the progress of science. Second, the data must refer to some aspect of human health or
illness, the amelioration of which would create an empirical improvement to all social and economic
classes of humanity. The social justice issues embedded in the ethical use of the data are overlooked
by the AMA. While the AMA suggests saving human lives makes the use of ill-gotten data acceptable,
it fails to address any effort to make up for the wrongdoing. Examples of added considerations could
be the use of the research to benefit people who were research subjects or their descendants or a
broader race or ethnic group that was victimized.

Examples of groups subjected to unethical research in the 20th century include Residential
Schools for Aboriginal Canadians,[5] senior citizens,[6] and typically, members of socially deprived
and undervalued populations.[7] The more reliable scientific data that emerged from Nazi
experimentation is in the areas of hypothermia,[8] malnutrition and starvation,[9] and anatomical
studies.[10] It is impossible to justify the use by the AMA criteria alone. If the research benefited
relatives and descendants of Nazi prisoners or the broader marginalized community of which they
belonged, its use might be considered ethical if there were no other way to obtain comparable data.
The value and impact of Nazi science is minimal at this point, with much more reliable data available,
but this type of transgression continues. There are modern examples of data procured in breach of
ethics that still lend themselves to this question.

CONCLUSION

These suggestions would add complexity and substance to the AMA's Code of Medical Ethics
Opinion. Beyond that scope, the considerations offered here would contribute to a stronger
statement about the obligations and prohibitions in circumstances in which data was wrongfully
collected. Too often, one could default to a brash 'means-to-an-ends' approach, especially when
issues of funding and measured productivity come into the equation. The considerations here
recognize that data gathered during the Holocaust is particularly sensitive. By eliminating any
encouragement of unethical practices, a stricter test for the use of ill-gotten research is a deterrent
but recognizes that sometimes the benefits call for the use of the research. The considerations also
recognize that one legacy of such data is to create good in the modern-day, even as we recognize
the shameful context of its creation and existence.
[1] Marcus, Ruth B; Moral Dilemmas and Consistency. Journal of Philosophy. 1980;77(3):121-136.
[2] American Medical Association. Opinion 7.2.2 Release of Data from Unethical Experiments Code of Medical Ethics. https://www.ama-
assn.org/delivering-care/ethics/release-data-unethical-experiments. Accessed January 3, 2021.
[3] Winick, 1979.
[4] Freedman, B. Scientific value and validity as ethical requirements for research: a proposed explanation. IRB: Rev Hum Subj Res.
1987;17(6):7-10.
[5] Mosby, I. Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and
Residential Schools, 1942–1952. Histoire sociale/Social History. 2013;46(91): 615-642.
[6] Beecher, H. Ethics and Clincial Research. N Engl J Med. 1966;274:1354-1360
[7] Rawlinson, P. Of Mice and Men: Violence and Human Experimentation. State Crime Journal. 2013;2(1):72-90.
[8] Fernardez, J.P. et al; Rapid Active External Rewarming in Accidental Hypothermia. JAMA.1970;212:153
[9] Winick, M. (ed.). Hunger Disease. New York, NY: Wiley; 1979.
[10] Norton, S.A.; On First Looking into Pernkopf's Atlas (part 1). Arch Dermatol. 2001;137:549-551
Author Biography
Kenneth Kirkwood
PhD, University of Western Ontario