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The American Journal of Bioethics
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In Defense of the Duty to Participate in Biomedical
Research
Rosamond Rhodes a
a Mount Sinai School of Medicine,
Published online: 17 Nov 2008.
To cite this article: Rosamond Rhodes XXXXXXXXXXIn Defense of the Duty to Participate in Biomedical Research, The American
Journal of Bioethics, 8:10, 37-38, DOI: XXXXXXXXXX/ XXXXXXXXXX
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dx.doi.org/10.1080/ XXXXXXXXXX
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The American Journal of Bioethics, 8(10): 37–44, 2008
Copyright c© Taylor & Francis Group, LLC
ISSN: XXXXXXXXXXprint / XXXXXXXXXXonline
DOI: XXXXXXXXXX/ XXXXXXXXXX
Open Peer Commentaries
In Defense of the Duty to Participate
in Biomedical Research
Rosamond Rhodes, Mount Sinai School of Medicine
In de Melo-Martin’s XXXXXXXXXXcriticism of my position in “Re-
thinking Research Ethics” (Rhodes 2005) and my “Reply
to Comments on ’Rethinking Research Ethics”’ (Rhodes
2005a), de Melo-Martin XXXXXXXXXXtakes it that I have argued
for “universal obligations independently of the social con-
texts” (28) and been “blinded... to the importance of the so-
cial context” (28). Unfortunately, she has not appreciated the
critical point that my target article and response presented
arguments for a prima facie duty to participate in research
which may, of course, be ove
idden by competing duties.
Our ability to fulfill duties to ourselves and others is cer-
tainly sometimes compromised by existing circumstances.
In this case, the lack of a United States healthcare system and
the cu
ent healthcare delivery a
angements which leave
millions without access to healthcare and research partic-
ipants without indemnification for harms incu
ed in re-
search collaboration, are circumstances that could very well
leave people with competing duties that ove
ide their duty
to participate in research.
That said, I shall take this opportunity to
iefly reprise
three inter-related arguments for a duty to participate in re-
search: 1) the argument from justice, 2) the argument from
eneficence, 3) the argument from self-development. I shall
then go on to explain that de Melo-Martin actually focuses
on a very na
ow range of examples, namely, clinical stud-
ies of pharmaceutical agents. In opposition to her stand, I
maintain that looking at the
oad spectrum of biomedical
esearch suggests the conclusion that we all have a duty
to participate in research and that participation also serves
our interests. As I see it, these arguments are untouched by
de Melo-Martin’s XXXXXXXXXXpoints about the social context of
United States biomedical research.
THE ARGUMENT FROM JUSTICE
We are all vulnerable to death, pain, disability, and the loss
of pleasure and freedom that may be consequent to disease.
These are conditions that we all would prefer to avoid, and
This commentary draws on my remarks at the (APA), Pacific Division meeting, Pasadena, CA (March 20, 2008), where I presented
comments on an article by Inmaculada de Melo-Martin: “A response to De Melo-Martin on a duty to participate in research.”
Address co
espondence to Rosamond Rhodes, Mount Sinai School of Medicine, One Gustave Levy Place, New York, NY. E-mail:
XXXXXXXXXX
when we or our loved ones are afflicted, we would all want
a remedy to be available. Almost everyone has and almost
all of their loved ones have medical needs at some point in
their lives. Yet, we must acknowledge the need for improv-
ing on the standard of care for numerous conditions such
as Alzheimer’s disease, Parkinson’s disease, sickle cell dis-
ease, end-stage renal disease, schizophrenia, and stroke. We
need to learn about the causes and natural development of
diseases, and the effectiveness of treatment for conditions
such as burns, cancer, and severed spinal cords. The desired
advance in treatment can only be achieved by studying ou
odies. Study involves some sacrifice of our flesh, our pri-
vacy, our safety, our comfort, and our time. Because these
asic goods are precious to everyone, non-instrumental ba-
sic principles of justice, such as equality and the anti-free-
ider principle, require each to do her fair share to advance
the common good. Because we each expect ourselves and
our loved ones to share in the benefits of future medical ad-
vances, at least to some degree, each of us must participate.
THE ARGUMENT FROM BENEFICENCE
Our obligation to do unto others as we would be done
y leads to the same conclusion. Because we would each
want effective treatment when we had a medical need,
and because such medical advances require the coopera-
tion of many in the research enterprise, non-instrumental
asic principles of universalization and mutual love dictate
that we should give of ourselves to help advance medical sci-
ence. Our emotional and genetic inte
elatedness, the lack of
an adequate alternative, and the commonality of the desire
to benefit from medical knowledge create the participatory
duty.
THE ARGUMENT FROM SELF-DEVELOPMENT
We each should live our lives by taking responsibility fo
ourselves, in Kantian terms, as good rulers over ourselves.
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The American Journal of Bioethics
Looking into the future with awareness of the fragility of ou
odies, we owe it to ourselves to take steps that would make
it most likely that we could fend off disease and disability
so as to retain our autonomy. Because biomedical research
offers our best chance for achieving that end, and because we
cannot will an end without also willing the necessary means
to achieve it, we are duty-bound to participate in research.
DE MELO-MARTIN’S NARROW VIEW
De Melo-Martin’s XXXXXXXXXXposition appears to derive from
focusing attention on a na
ow set of examples, specifically
clinical studies of pharmaceutical agents. Looking instead at
the
oad spectrum of biomedical research and the emerging
work on personalized medicine yields different conclusions
about the duty to participate in biomedical research.
Although approximately 45 million uninsured Ameri-
cans have no access to primary care, we all have access to
emergency medical care and to some measure of charity
care, and the children of many uninsured households are
covered by the State Children’s Health Insurance Program
(S-CHIP). Beyond that, many of us are hopeful that the in-
tolerable status quo will be co
ected in the not too distant
future. This amounts to saying that, although the cu
ent dis-
tribution of healthcare is far from just, we all do have a stake
in advancing the field. In addition, even at present, a good
deal of biomedical research helps everyone or everyone with
a similar medical need. Public health research, disease con-
trol research, preventive medicine research, mass casualty
medical research, quality assurance research, health policy
esearch all focus on populations, leaving no one out. This
amounts to saying that the social disparities are not so sig-
nificant as to defuse the duty to participate in research.
Furthermore, while some research, particularly some of
the phase one drug studies that De Melo-Martin XXXXXXXXXXdis-
cusses, may involve significant risks, a good deal of research
does not. Even when drug and device studies involve risk,
thoughtful regulations and proper oversight should assure
that only a reasonable degree of risk is involved and that
steps should be taken to minimize even that risk.
OUR INTERESTS
Looking into the genetics-informed future makes the case
even more strongly. The expectation is that researchers will
learn a great deal more about the human genome and the
human microbiome and that this new knowledge will allow
medicine to tailor treatments to individuals. These advances
promises to make medicine more effective and, therefore,
more affordable. The studies, however, will require the de-
velopment of biobank and sample bank repositories with
the participation of a tremendous number of subjects. To
eap the rewards of advancing the practice of medicine,
oad public participation will be required. Furthermore, to
the extent that any group abstains from participation, thei
members will be less able to share in the rewards precisely
ecause their genetic and microbiomic samples are absent
from the pool. When you and yours are not studied, the
information to help you will not be available.
I am in no way an apologist for cu
ent injustices in
our healthcare a
angements. The poor, those in the lowe
middle-class, part-time workers, those who have lost thei
jobs, those with chronic illness, undocumented immigrants
and their children all lack good access to health care, and
those injustices call out for co
ection. I do, however, want to
point out that existing injustices can only be exace
ated by
members of those groups refusing to participate in research.
If your group is not studied, it is less likely that advances to
enefit people with your disease or with your genetic sus-
ceptibilities will be developed. And if your group does not
participate in studies that assess health disparities, no one
will know that health disparities of the sort that negatively
affect you exist, and co
ective measures will not be taken.
So, in addition to the principle-based arguments for a duty
to participate in research, add the prudential argument fo
esearch participation.
Furthermore, if you do not play, you have little say.
When research participation is a voluntary activity involv-
ing a relatively small group of kind-hearted and gullible
individuals, the rest of the population is