Institute for Christian
Teaching
Education Department of
Seventh-day Adventists
AND UNIVERSITIES: SUGGESTED
GUIDELINES
by
Beverly J. Rumble
Editor, Journal of
Adventist Education
General Conference of
Seventh-day Adventists
Silver Spring, Maryland
Prepared for the
International Faith and
Learning Seminar
held at
Newbold College, Bracknell,
Berkshire, England
June 1994
207-94 Institute for
Christian Teaching
12501 Old Columbia Pike
Silver Spring, MD 20904 USA
The term "human experimentation" often
brings to mind horrifying abuses of human rights, such as experiments in Nazi
concentration camps. Other, less famous
examples include the following:
In the late
1800s E. Franenkel inoculated the eyes of terminally ill infants with gonorrhea
cultures.[1]
Early in the 20th
century Richard P. Strong (later professor of tropical medicine at Harvard)
injected plague germs into death-row inmates in the Philippines.[2]
In the Tuskegee
(Alabama) syphilis experiment that stretched over 40 years, researchers
withheld treatment from 399 poor black men so that they could study the
physical effects of untreated venereal disease.[3]
In 1966, Henry
Beecher, a Harvard Medical School professor, exposed more recent abuses in
human experimentation. His "roll
of dishonor" included withholding of penicillin from uninformed servicemen
with streptococcal infections, a number of whom contracted rheumatic fever;
feeding of live hepatitis viruses to residents of a state institution for the
retarded to study the disease and attempt to develop a vaccine; the injection
of live cancer cells into elderly and senile hospitalized patients without
telling them the nature of the cells; and a number of other shocking abuses.
Beecher maintained that "unethical or questionably ethical procedures are
not uncommon" among researchers, and that the rights of human subjects
were widely disregarded.[4]
In order to
investigate whether side effects such as nervousness and depression could be
caused by oral contraceptives, Goldzieher gave dummy pills to 76 women who
sought treatment in a San Antonio, Texas, clinic to prevent further
pregnancies. None of the women was told
that she was participating in research or receiving placebos. Most of the
experimental subjects were poor Mexican-Americans with several children.[5]
In at least 31
separate experiments between the mid-1940s and the 1970s the U.S. Government
exposed nearly 700 people to radioactive substances. These included an
experiment in which Manhattan Project scientists, the designers of the first
atomic bomb, injected 18 people with "relatively massive quantities of
bomb-grade plutonium" to see how much of the toxic substance their bodies
would retain.[6]
The above examples highlight abuses in medical
experiment. But some investigations by
social scientists have been scarcely less questionable. For example:
Zillman and
Bryant randomly assigned 80 male and female undergraduates to watch various
amounts of heterosexual pornography of a six-week period. The students were
then asked to estimate the percentage of U.S. adults performing certain sexual
acts, and to recommend a prison term for a rapist described in a newspaper
article.[7]
To evaluate a
questionnaire that proported to test peoples' comprehension of moral
principles, a team of social scientists proposed to administer it to teenagers
at a male juvenile delinquency rehabilitation center, and then tempt them to
lie or steal.[8]
Posing as
fellow believers, researchers covertly studied a small flying saucer cult whose
members were waiting for the end of the world. The ratio of
researcher-believers was so high, however, that their participation wronged
those studied not only by lying to them but also by providing false
"evidence" to reinforce their beliefs (and at the same time, altering
the phenomena under investigation).[9]
Other
studies have attempted to find a genetic link to criminal behavior or
intelligence,[10] or have
exposed subjects to psychoactive drugs without their knowledge.
Professors and students at
Seventh-day Adventist healthcare training institutions, as well as at our other
colleges and universities sometimes conduct medical and social science
experiments and studies using human subjects.
In the United States, the federal government closely regulates medical
experimentation on humans; therefore, that area will not be the primary focus
of this paper, though some of the policies established for healthcare
institutions provide the basis of its suggestions for social science research.
Administrators would be well advised to use these guidelines in developing
policies for their institutions. A list
of helpful sources is included at the end of the paper.
Reasons of Experimenting on Human Subjects
As abhorrent as the above
experiments seem to us today, they appeared perfectly defensible and even
urgently necessary to the people who performed them. So we are forced to look
more closely at the reasons for using human beings in research.
In general, researchers
argue that hey are contributing to and extending human knowledge through
research, and that their studies advance health, science, and human welfare
(perhaps also providing the researchers with some renown in the annals of
science). An ethicist cementing on such
research said that these scientists seek to avoid the "menace of avoidable
ignorance."[11] In times of
national emergency, such as wartime, research seems a patriotic imperative, for
it provides knowledge that may help subdue enemy aggression or save the lives
of military personnel.
Researchers claim that they
need to use human subjects in their studies because they cannot achieve the
same results with simulations or animals. This is especially true in social
science research. In resisting external
controls on their research, they argue that freedom of inquiry is essential for
healthy research.[12]
Despite researchers'
commitment to the general good and to extending human knowledge, their
"omnivorous appetite"[13]
for scientific research, as ethicist Paul Ramsey puts it, can cause them to
lose sight of the importance of each individual subject. As Henry Beecher
pointed out.
"Any classification of human experimentation as
'for the good of society' is to be viewed with distaste, even alarm.
Undoubtedly all sound work has this as its ultimate aim, but such high-flown
expressions. . . have been used within recent memory as cover for outrageous
acts. . . There is no justification. . .for risking an injury for the benefit
of other people. . .such a rule would open the door wide to perversions of
practice, even such as were inflicted by Nazi doctors on concentration camp
prisoners. . .The individual must not be subordinated to the community."[14]
Although progress depends
heavily on science and technology, we no longer naively assume that this is the
way to the good life. Nuclear weapon,
widespread pollution and abuses of human beings in research like that cited
above have sensitized us to the potential for evilas well as goodthat science
and technology can achieve. Previously
undreamed-of capabilities for human beings to control birth and death, to
transplant human organs, even to manipulate genetic material, have highlighted
the need for external controls over researchers and medical personnel.
Exposes in scientific
journals and the popular press have revealed a stark conflict of interest
between researchers' ambitions and subjects' well being. As a result, in the U.S. federal regulations
have been passed requiring oversight and collective decision making.[15]
The areas that have
generated the most serious ethical problems are the design of the experiment,
choice of subjects, obtaining informed consent, balancing risk to the subject
with benefits to the researcher and society, and maintaining the participant's
dignity and privacy. These topics will be dealt with in greater detail later in
this paper.
Moral Implications
As Christians, we view the
scientific method differently from those who hold a naturalistic philosophy
about the origins of human beings. We believe that God designed the universe to
operate in an orderly way, although He may occasionally step outside of natural
processes to perform miracles.
Therefore, since the universe is orderly, and God made human beings
capable of rational thought, we can design experiments to explore the
mechanisms of the physical universe and even to study human behavior through
the social sciences. We can thereby discover some of the marvelous aspects of
God's creation, extend the boundaries of knowledge, and alleviate human
suffering.
However, our beliefs will
put certain constraints on the kinds of scientific research that we do. For
example, if we believe that human beings are created in the image of God, we
will treat humanity at every stage of life with respecteven miscarried
fetuses, human tissue, and frozen embryosin contrast to how we would act if we
believed that homo-sapiens are essentially no different from other creatures in
the natural world.
Human experimentation raises
a number of religious and ethical dilemmas.
Traditionally, such research occurred in the field of medicine, where
the physician was expected to be committed to the good of the individual
patient. The primary rule of medical morality was to do no harmbased on the
Hippocratic Oath and guidelines for medical ethics drawn up by the General
Assembly of the World Medical Association in 1949.[16]
The timing of the latter guidelines was doubtless inspired in part by the
Nuremberb trials, which revealed the flagrant abuses of Nazi researchers.
How do we balance the needs
of the individual with those of society? Should researchers be allowed to
induce or coerce individuals to subject themselves to certain risks for the
good of others? To clarify this, let us look at two extreme positions: The
first would subordinate the individual to the good of society. This would allow
medical and psychological experimentation on human beings without their consent
if the studies would benefit society. This represents the classical utilitarian
theory of choosing the greatest good for the greatest number. Thus, anytime a
researcher could claim that a procedure or experiment would benefit society, he
or she could justify overriding the rights of the individuals involved for each
person counts for only one.
At the opposite extreme,
absolute individualism acknowledges no significant relationship between the
individual and society, and asserts the primacy of the individual over the
group. Most ethicist acknowledge that at times the individual must be limited
by the needs of society, and that each person has an obligation, as part of a
community, to act in ways that benefit others.
Human beings do not exist as isolated atoms. They
are actually constituted by their relationshipsto the world, to their family,
to their fellow human beings, to the Church, and to God. It is important to
stress that these relationships are not extrinsic or spatial but intrinsic;
they belong to the very fabric of each person's being.[17]
Jesus' admonition to
"love your neighbor as yourself" ties together both respect for
persons and one's obligation to the larger community.
It may be helpful at this
point to divide moral obligations into two categoriesthose that are required
of all human beings, and others that are heroicabove and beyond the call of
duty. Some people would want to volunteer for experiments to help others,
despite the risk to themselves. But no one should be coerced into participating
in such studies. In every case, we must evaluate the balance between the risks
and potential benefits and give potential subjects enough information to allow
them to make an informed choice.
In recent times, Western
society has become more concerned about protecting the individual against
possible invasions of dignity, privacy, and freedom. Christian ethics has
always asserted that every person possesses certain inalienable rights, that
individuals are ends in themselves. They are never to be used merely as a means
to something elseno matter what their race or color, how well or poorly
endowed with talents, or how primitive or developed. Therefore, the individual
takes primacy over society. However much the good of the whole exceeds that of
any of its parts, and whatever duties each person owes to society, individuals
constitute the supreme value, and society exists only to promote the good of
its members.
"In view of people's
tendency to exploit their fellow human beings, the scriptural revelation of the
innate, inalienable dignity and value of the individual provides an indispensable
bulwark of freedom and growth."[18]
Christ's example and teachings and the admonitions of Old Testament prophets
provide a basis ethical framework for making decisions about how to treat
people, both in daily life and in experimentation.
Our Lord has taught us that the Decalogue is
centrally a statement of what love demands. But since justice is one of the
things that love enjoins, it is possible to distill from the Ten Commandments a
list, even though it be a partial list, of the rights and liberties men can
claim. . . This. . is only a partial list of the rights we tend to claim. . .
We can go to the Old Testament prophets and learn from, say, Hosea, that the
powerless have a right to be protected against the strong.[19]
Each human being is unique,
created in the image of God and redeemed at an infinite price. He or she
possesses the power to think and to do, according to Ellen White.[20]
This means that God places a high value on allowing each person to choose
freely what actions he or she will take. This principle should influence
researchers' choice of subjects and topics for investigation. They too are free to choose, but should keep
in mind Paul's admonition: "Brethren, ye have been called unto liberty;
only use not liberty for an occasion to the flesh, but by love serve one
another" (Galatians 5:13).
Research, optimally, should
consist of a "truly joint venture between two human beings working
together for the increase of human knowledge and the ability of human beings to
serve one another. From this perspective, the subject is a coparticipant in the
human quest for progress."[21]
This gives the subject a more active role, and requires the researcher to
respect his or her humanity and rights as a freewill agent. Therefore, as Hans
Jonas points out, the most highly motivated, the most highly educated, and the
least captive members of our communities would make the best research subjects.
Subjects with poorer knowledge, motivation, and decision-making freedoms (who
are consequently more readily available in terms of number and possible
manipulation) should be used more sparingly and reluctantly.[22]
Curran suggests as a criterion whether one would subject his or her own
children to the proposed experiments.[23]
Unfortunately, this has not been the usual method of choosing subjects
for experimentation. Those from lower socioeconomic classes, minorities,
prisoners, the gullible, and the mentally incompetent have borne an undue share
of the burden as subjects of experimentation.
To treat individuals
ethically means not only to respect their decisions and protect them from harm,
but also to actively attempt to ensure their well-being. This is encompassed in
the term beneficence, which
implies the following principles for research on human beings: "(1) do not
harm, and (2) maximize possible benefits and minimize possible harms."[24]
Although discovering what
will in fact benefit people may require exposing them to risk, forethought and
oversight are needed to assess when it is justified to seek certain benefits
despite the risks involved, and when the experiment should be forgone because
of the possible risks. Such risks may
involve psychological, physical, legal, social, or economic harm.
For the Christian
researcher, the principle of stewardship is also a relevant concern. "We
do not possess anything in the world, absolutely, not even our own [or other
people's] bodies; we hold things in trust for God, who created them, and are
bound, therefore, to use them only as He intends that they should be
used."[25]
Montemorelos University's
"Philosophy and Role of Research" statement expresses well the
concept of stewardship:
A consciousness of our stewardship of God's creation
prohibits the investment of time, ability, or economics resources in the search
of knowledge that may result in adverse effects for human life, or that involve
immoral elements or consequences. By the same token, this consciousness
motivates us to the diligent research of all practical possibilities toward the
common well-being of mankind.[26]
Christian principles should
be applied at every stage of researchplanning the study, choosing subjects,
informing participants of the risks and benefits, performing the experiment,
debriefing subjects, and guarding the privacy of subjectsas well as careful
analysis of the data, reporting of the study, and ethical use of the data after
the study has been completed.
Design of the Experiment of Study
David Rutstein points out
that "Attention must be given to the ways an experiment can be designed to
maintain its scientific validity, meet ethical requirements, and yet yield the
necessary new knowledge."[27]
The experiment's design goes straight to the basis questions asked by the
investigator. What problem does he or she seek to solve? What information does
he desire to obtain? Are the proposed methods and techniques consistent with
Christian ethics?
In the medical area, a
standard question is whether the experimentation is therapeutic, or conducted
only for its research value. Research is clearly non-therapeutic when it is
carried out solely to gain information that will benefit others, but which is
of no use to the patient.
An analysis of the design of
social science experiments should address the following questions:
Is it ethical
to ask people to perform the actions specified by the researcher?
Will the procedures
cause psychological injury or humiliation to the subjects?
Could any part
of the research cause irreversible changes in the subjects' personality or
moral values?
Do the
researcher's actions mislead subjects by lending support to false ideas or
prejudices?
Application of the principles underlying these
questions would clearly eliminate any proposals that require participants to
perform illegal or immoral acts, that expose them to pornography or depictions
of violence, or ask them to participate in psychological experiments that would
be demeaning to themselves or to others.
Potential conflicts of
interest and threats to researcher integrity also present ethical
dilemmas. Research sponsored by an
organization that expects a particular result (a tobacco company, for example),
whether or not it uses human subjects, should raise a red flag for researchers
who seek to do pure science and arrive at truth, unencumbered by any type of
coercion. Christian researchers will doubtless also want to engage in serious
reflection and prayer, perhaps seeking pastoral and ethical guidance, before
participating in research that may contribute to military weaponry or be used
to destroy or harm human beings or the natural world.
Choosing Subjects for Research
Methods for choosing
subjects may not be as obvious or ethically neutral as some researchers would
have us believe. Participant selection raises ethical issues on two levels:
social and individual. Researchers should not offer potentially beneficial research
only to certain categories of persons, or select only "undesirable"
persons for risky research. Social
justice requires that distinctions be drawn between classes of subjects. Those
who cannot give consent or who ought not to be further burdened, such as the
indigent, children, the institutionalized or mentally infirm, and prisoners
should be used only under certain carefully controlled conditions.