Evaluation in Today’s World. Veronica G. Thomas
disabilities, and enlisted military personnel. While officials authorized the wartime experiments to establish health and safety standards for the thousands of workers in atomic bomb plants, few of the participants in the experiments gave informed consent. In fact, most had no knowledge that they were being exposed to radioactive materials. After the war ended, officials justified expanding the study of the effects of radiation on grounds of national security. In the 1990s, following congressional investigations, numerous official reports, scholarly studies, and lawsuits, the government offered apologies and financial compensation to some of the victims of human radiation testing.
The HeLa Story: 1950s and Beyond
Until the New York Times best seller The Immortal Life of Henrietta Lacks (Skloot, 2010) was published, and subsequently presented as a dramatic television film, Henrietta Lacks was virtually unknown to the general public. At the age of 30, Lacks, a working-class, African American tobacco farmer and mother of five, living near Baltimore, Maryland, was a cancer patient in the “colored ward” of Johns Hopkins Hospital. Lacks died of an unusually aggressive form of cervical cancer in 1951 at 31 years of age. Tissue samples from Lacks were taken during her diagnosis and treatment, and portions were passed along to a researcher without her knowledge or permission, as was common practice at the time (Beskow, 2016). Lacks’s cell line, referred to as HeLa (using the first two letters of her first and last names), is the first immortal human cell line in history. HeLa remains viable today and has been used in laboratories around the world for a vast array of biomedical research, contributing to some of the most important medical advances of all time, including the polio vaccine, chemotherapy, cloning, gene mapping, and in vitro fertilization. Further, HeLa cells were the first human biological materials ever bought and sold, which helped launch a multibillion-dollar industry. In 1971, Obstetrics and Gynecology (a scientific journal) named Henrietta Lacks as the HeLa source, and this disclosure was subsequently revealed by other scientific publications, including Nature and Science, as well as the mainstream press. Reportedly, it was not until 1973, two years after Lacks’s name was published in a scientific journal as the source of HeLa cells, that her family learned about the HeLa cells. This case, while consent was not required, raises serious ethical concerns about privacy and respect for family members.
Beyond Medical Studies and Physical Harm: The Milgram Study of 1963
Biomedical researchers were not alone in engaging in unethical practices. There, too, are historical examples of horrific ethical violations occurring in social and behavioral science research. Such violations often resulted in psychological or social harm to participants including feelings of shame, embarrassment, loss of self-confidence, and depression. One of the most infamous such studies was conducted in 1961 by Stanley Milgram, a psychologist at Yale University, on the conflict between obedience to authority and personal conscience. Participants were led to believe they were administering real pain through electric shocks to another participant as part of a learning experiment, which was designed to see if ordinary Americans would obey immoral orders as many Germans had done during the Nazi period. Baumrind (1964) noted that participants became distressed and nervous when they thought they were administering severe shocks, but when participants asked for the experiment to be stopped, the researcher in charge insisted that they continue. In the Milgram study, participants sustained no physical harm; however, they suffered shame and embarrassment for having behaved inhumanely toward their fellow human beings. Please reflect upon and discuss the questions presented in the textbox.
Reflect and Discuss: Ethical Considerations and Authority Figures
In contrast to the 1940s and 1950s, in today’s society do you think everyday citizens are more aware of ethical behavior related to social and behavioral sciences research—that is, right versus wrong—or do you believe that an authority figure will always be able to sway people’s judgment toward unethical behavior? Under what conditions do you believe this is less or more likely to be the case? Provide examples.
The National Research Act of 1974
Due primarily to publicity from the Tuskegee Syphilis Study and after a series of congressional hearings on human subjects research, the National Research Act of 1974 was passed. It authorized federal agencies to develop human research regulations and established the first institutional review boards as a mechanism through which human subjects would be protected. Additionally, the National Research Act created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Decades after the Nuremberg Code of 1947 and the 1964 Declaration of Helsinki that provided guidance to medical doctors conducting research involving human subjects, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1978) released the Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. This document, known colloquially as the Belmont Report, established three basic ethical principles that are the cornerstone for regulations involving human participants:
1 Respect for persons, or recognition of the personal dignity and autonomy of individuals, and special protection of those persons with diminished autonomy
2 Beneficence, or obligation to protect persons from harm by maximizing anticipated benefits and good outcomes for science, humanity, and the individual and by minimizing or avoiding unnecessary risk, harm, or wrong
3 Justice, or ensuring that the benefits and burdens of research are distributed fairly and that research procedures are reasonable, nonexploitative, carefully considered, and fairly administered (pp. 4–6)
The principles identified in the Belmont Report relate both to the participant as an individual and to the participant as a member of social, racial, sexual, or ethnic groups. This means that research participants should not be either favored or disfavored (e.g., more or less likely to be involved in risky research) simply because they are a member of a particular class of people.
The Continuing Importance of Research Ethics
Despite regulations and consciousness-raising regarding ethics in medical, social, and behavioral sciences research, it is an area that still needs attention and monitoring by internal and external bodies. In the article “What Is Ethics in Research and Why Is It Important?” Resnik (2015) cites a number of important reasons for a continued emphasis on ethics in research:
To promote the goals of research, such as the search for knowledge and truth and the avoidance of error
To promote essential values for collaborative work, including trust, accountability, mutual respect, and fairness
To ensure that researchers are held accountable for their actions given policies on conflict of interest, misconduct, and research involving humans or animals
To build public support for research to the extent that people feel they can trust its quality and integrity
To support additional important social and moral values, including the principle of doing no harm to others (paras. 7–11)
By introducing evaluators to the history of research ethics and important principles such as “doing no harm,” “beneficence,” and “respect for persons,” they are better positioned to, first, identify potential ethical dilemmas when they emerge and, second, be deliberate about how to address the issue in a manner that is fair and just. Such an understanding can help the evaluator identify ethical triggers (Munteanu et al., 2015), or elements that indicate potential challenges during the evaluation, particularly when working with participants who belong to vulnerable or marginalized populations (e.g., persons with disabilities), when dealing with sensitive topics (e.g., abortion services), and when there is the possibility of blurred lines between the evaluator and the end user.
Ethics in Evaluation
Virtually every scientific field or discipline has guidelines that are codified in a set of statements put forth