Experimenting on humans: A Christian perspective
By Beverly Rumble
The term human experimentation conjures up mental images of horrifying experiments in Nazi concentration camps. In recent times, however, it includes a wide range of activitiesfrom surveys to drug tests to behavioral studies. It is not uncommon for college and university students to use human subjects for research in medical, scientific, and psychological fields. Some countries and institutions strictly regulate such research, but others do not. However, Christians have an obligation to adhere to a higher standard of conduct as they seek to expand the horizons of science while living out their faith.
This obligation raises some significant issues: reasons for such research, moral cautions, choosing the subjects, designing the experiment, and guarding individual rights.
Why experiment on humans?
The history of research on human subjects has recorded many instances of serious violations of human rightsand not just under dictators. Early in this century, a future professor of tropical medicine at Harvard University injected plague germs into death-row inmates in the Philippines.1 For 40 years, researchers on syphilis in Tuskegee, Alabama, withheld treatment from some 400 poor black men in order to study the physical effects of untreated venereal disease.2 For 30 years after the end of World War II, the U.S. government conducted 31 experiments exposing 700 people to radioactive substances.3
Experiments by social scientists have been scarcely less questionable. For example, in one study researchers randomly assigned 80 undergraduates of both sexes to watch various amounts of heterosexual pornography for 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.4
In another study, researchers, posing as fellow believers, covertly studied a small flying saucer cult whose members were waiting for the end of the world. The ratio of researcher-believers to true-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 (while altering the phenomena under investigation).5
Why carry out such bizarre experiments?
One reason researchers give is that they seek to extend human knowledge and enhance human welfare. One ethicist suggests that such research seeks to avoid the menace of avoidable ignorance.6 In times of national emergency, such as war, research seems a patriotic imperative to deter enemy aggression and save ones military personnel. Proponents of unfettered research may also argue that the end justifies the means, so individuals can be sacrificed for the good of the majority.
Researchers, especially in the social sciences, say they must use human subjects because they cannot achieve the same results with simulations or animals. They argue that freedom of inquiry is essential for optimal results.7 However, their omnivorous appetite8 for scientific research, as ethicist Paul Ramsey puts it, can cause researchers to overlook the importance of the individual.
As Christians, we view the scientific method differently from those who hold a naturalistic philosophy about the origin of human beings. We believe that God designed the universe to operate in an orderly way, although He may occasionally work outside of natural processes in miraculous ways. Since God made us rational beings, we can design experiments to explore the mechanisms of the physical universe and human behavior, thus discovering some of the marvelous aspects of Gods creation and extending the boundaries of knowledge and alleviating human suffering.
However, our beliefs will affect the kinds of scientific research that we choose to do. Human experimentation raises a number of religious and ethical dilemmas. Traditionally, such research occurred in the field of medicine, where the physician was supposed to be committed to the welfare of each patient. The primary rule 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 response to the flagrant abuses by Nazi researchers.9
Christian ethics asserts that no human beingregardless of race or color, how well or poorly endowed with talents, or how primitive or developedshould be used merely as a means to achieve some research goal. Whatever responsibility human beings have to society, individuals are of supreme value, and society exists only to promote the good of its members.
In view of peoples 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.10 Christs example and teachings and the admonitions of biblical writers provide a basic framework for making decisions about how to treat people, both in daily life and in research.
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.11 This means God places a high value on freedom of choice. This principle should influence researchers choice of subjects and topics for investigation.
For the Christian researcher, stewardship becomes another moral imperative: The Philosophy and Role of Research statement of Montemorelos University, a Seventh-day Adventist institution of higher learning in Mexico, expresses well the demands of Christian stewardship in research: A consciousness of our stewardship of Gods creation prohibits the investment of time, ability, or economic 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.12
Given that research may require human subjects, how does the researcher choose them? Optimally, research involving human subjects 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.13 This defines the subjects role as an active one, 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 human communities would make the best research subjects. Subjects with poorer knowledge, motivation, and decision-making freedoms (who may be more readily available and easier to manipulate) should be used more sparingly and reluctantly.14 Curran suggests asking whether one would subject his or her own children to the proposed experiments.15
Research should treat individuals ethically. To say that means not only respecting individuals decisions and protecting them from harm, but also actively trying to ensure their well-being. Two principles may help: (1) do not harm, and (2) maximize possible benefits and minimize possible harms.16
Designing the experiment
Another important Christian concern in experimenting on humans has to do with research design. 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.17
In the medical area, researchers should ask themselves if the experiment 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, and is of no use to the patient.
In social science experiments, the researcher should ask the following questions:
Clearly, such a procedure would eliminate proposals that require participants to do things that are illegal or immoral, that ask them to behave in ways that are demeaning to themselves or to others, or that expose them to scenes of pornography or violence.
Other ethical dilemmas include potential conflicts of interest and threats to researchers integrity. They may be offered grants or other inducements by special interests (tobacco or alcohol companies, for example) or be pressured to produce data supporting a particular agenda. Christian researchers will doubtless also want to engage in serious reflection and prayer, perhaps seeking pastoral and ethical guidance, before designing research that may be used to harm or destroy human beings or the natural world.
Guarding individual rights
The Christian researcher using human subjects must pay particular attention to guarding individual rights. This would involve principles of disclosure, freedom of participation, avoidance of deception, and protection of privacy.
Disclosure. Candor helps ensure integrity in research, and keeps the researcher from exploiting participants. No subject should be seen as simply a case or a statistic, a representative of some class or category of persons.
As free moral agents, human beings have the right to control their own lives and to receive enough information to make informed decisions; therefore, researchers should share adequate facts to enable the subjects to judge for themselves the balance between risk and benefit, and to decide whether to participate in the study.
In general, the law in some countries imposes a strict duty of disclosure, wherever an individual with a great deal to lose is exposed to a risk or is asked to relinquish rights by someone with considerably greater knowledge.18 Therefore, the researcher should describe for each subject the procedures to be followed, and why. This would include (1) identifying experimental procedures; (2) describing the discomforts and risks as well as benefits of the study; (3) identifying other procedures that might be helpful; (4) offering to explain any questions about the procedures; (5) assuring the subject that he or she can withdraw from the project at any time.19 The details should be described in a way that subjects can understand, allowing time for them to return with additional questions.
Freedom to participate. A Christian approach to using human subjects will ensure that no coercion is employed and that the individual is free to participate or not participate in the research. If explanations are geared to their level of comprehension, even poorly educated persons can participate freely in research. However, if indigent people are offered cash payments or medical care in exchange for participating, or if people volunteer for a study because of financial need or their desire for some benefit, such as a reduced prison sentence, this could constitute coercion.
John Fletcher, a Christian ethicist who has devoted much study to the practical aspects of informed consent, suggests that several other factors can affect the autonomy of subjects: whether they are ill or dependent on the researcher for medical care, the circumstances surrounding the institution, and the desire to please the investigator.20 Like their Master, researchers should treat with special regard children, the underprivileged, and the mentally incompetent.
Avoidance of deception. Many researchers argue that the only way they can get accurate information about their subjects behavior is to withhold information about the experiment or study. If the subjects knew their actions were being studied, they might act differently. This is a difficult problem. Simulations are often inadequate, since subjects asked to describe how they would react in a particular situation may not know, or dont want to tell. On the other hand, if the simulations are too realistic, they may be unduly stressful for subjects.21
Deception always has the potential of harming those being deceived, since they might not have participated in the research if they had been fully informed. They may lose faith in the researchers and other authority figures, and even in the merits of science in general. Deception may also affect the researchers reputation for truthfulness as well as his or her character. When researchers trick, deceive, and manipulate their subjects, they become accustomed to demeaning other peoples humanity. They may develop delusions of grandeur and omnipotence, and become calloused and cynical, which could destroy the integrity of their scientific work.
Protection of privacy. Researchers need to guard subjects privacy. Invasion of privacy includes manipulating people to do something embarrassing, or obtaining and disclosing private information that places them in a false light. Having sensitive information about an individual gives the researcher a great deal of power. Depending on how the data are used, the person may be subjected to ridicule and intoleranceor even to legal or governmental action. If the studies are used to stereotype an ethnic group, the harm might even extend to his or her community and descendants. Personal interviews are especially problematic, since records on identified subjects may be subpoenaed or used in legal proceedings.
The following questions may help protect privacy: For what purpose is the information sought? Is this purpose legitimate and important? Is the information necessary to the research? Are the proposed methods the only or the least offensive way to obtain the information? What restrictions or restraints have been placed on the privacy-invading techniques? How will this information be protected once it is recorded?22
To help sensitize themselves to the ethical and procedural dilemmas described above, Adventist university students should take ethics courses, read widely in related areas, and study the codes of ethics for their professions.23 This will help them better understand how Christian principles interact with real life. A search of the Internet will produce a large number of helpful materials, including ethics guidelines and codes of conduct for human experimentation. (See box on page 7.)
Institutions can set up internal review boards that require prospective research students and professors to sign a form indicating that they understand the ethical principles of using human subjects in experimentation and intend to follow specific guidelines, including the use of consent forms for participants. The following areas are usually included in such policies:
By following the above suggestions, Adventist students,
professors, and researchers can discover the exciting mysteries of science,
while respecting and benefitting humankind.
Beverly Rumble is the editor of The Journal of Adventist Education. She is also the secretary of The Christian View of Human Life Committee of the General Conference of Seventh-day Adventists. Her mailing address: 12501 Old Columbia Pike; Silver Spring, Maryland 20904; U.S.A.
Notes and references
1. M. H. Pappworth, Human Guinea Pigs (Boston: n.p., 1967), p. 61.
2. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: The Free Press, 1981).
3. After a two-year investigation, Massachusetts Rep. Edward Markey in 1986 released a report detailing the experiments, entitled American Nuclear Guinea Pigs: Three Decades of Radioactive Experiments on U.S. Citizens. Markey stated that officials had conducted repugnant and bizarre experiments on hospital patients, prison inmates, and hundreds of others who might not have retained their full faculties for informed consent. Reported by Debra D. Durocher in Radiation Redux, American Journalism Review, 16 (March 1994), 2: 35.
4. Dolf Zillman and Jennings Bryant, Pornography, Sexual Callousness, and the Trivialization of Rape, Journal of Communication 32 (Autumn 1982), 4: 11
5. L. Festinger, H. W. Riecken, and S. Schachter, When Prophecy Fails (Minneapolis: University of Minneapolis Press, 1956), reported by Joan Cassell, Harms, Benefits, Wrongs, and Rights in Fieldwork, in Joan E. Sieber, ed., The Ethics of Social Research (New York: Springer-Verlag, 1982), p. 25.
6. Paul E. Freund, Experimentation With Human Subjects (New York: George Braziller, 1970), p. xiii.
7. Dorothy Nelkin, Forbidden Research: Limits to Inquiry in the Social Sciences, in Tom L. Beauchamp, et al., Ethical Issues in Social Science Research (Baltimore: Johns Hopkins University Press, 1982), p. 163.
8. Paul Ramsey, cited in David Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (Basic Books, 1991), p. 96.
9. The text of the code: Under no circumstances is a doctor permitted to do anything that would weaken the physical or mental resistance of a human being except from strictly therapeutic or prophylactic indications imposed in the interest of his patient (cited by Charles Curran, Issues in Sexual and Medical Ethics [Notre Dame: University of Notre Dame Press, 1978], p. 77).
10. Robert C. Mortimer, The Standards of Moral Right and Wrong, in Raziel Abelson and Marie-Louise Friquegnon, Ethics for Modern Life (New York: St. Martins Press, 1991), p. 20.
11. Ellen G. White, Education (Mountain View, Calif.: Pacific Press Publ. Assn., 1903), p. 17.
12. Personal communication from John Wesley Taylor, Ph.D., Director of University Research, Universidad de Montemorelos, Mexico, February 24, 1994.
13. Curran, p. 87.
14. Hans Jonas, Philosophical Reflections on Experimenting With Human Subjects, in Experimentation With Human Subjects, pp. 18-22; cited by Curran, p. 87.
15. Curran, p. 89.
16. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects in Research (OPRR Reports, April 18, 1979), p. 4.
17. David D. Rutstein, The Ethical Design of Human Experiments, in Freund, p. 363.
18. Charles Fried, Medical Experimentation: Personal Integrity and Social Policy (Amsterdam: North-Holland Publ. Co., 1974), pp. 25, 27.
19. Ibid., p. 42.
20. John Fletcher, Realities of Patient Consent to Medical Research, Hastings Center Studies 1(1973), 1:39-49.
21. Alan C. Elms, Keeping Deception Honest: Justifying Conditions for Social Scientific Research Stratagems, in Tom L. Beauchamp, et al., Ethical Issues in Social Science Research (Baltimore: Johns Hopkins University Press, 1982), pp. 235, 236.
22. W. A. Parent, Privacy, Morality, and the Law, in Joan C. Callahan, ed., Ethical Issues in Professional Life (New York: Oxford University Press, 1988), p. 220.
23. See, for example, Clifford G. Christians and Catherine L. Covert, Teaching Ethics in Journalism Education (Briarcliff Manor, N.Y.: The Hastings Center, 1980); Rena A. Gorlin, ed., Codes of Professional Responsibility (Washington, D.C.: The Bureau of National Affairs, Inc., 1990); American Psychological Association Ethics Committee, Rules and Procedures, American Psychologist 47:12, pp. 1612-1628.