Ethics in Research

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Research often involves human life and no matter what race, religion, health, or mental capacity of the participants, the researchers have a responsibility to make ethical decisions from the initial steps of the study to the culmination of the publication. Teachers, students and governmental officials advocate tolerance, diversity and rights; yet sometimes these groups are involved in unethical research practices. Even when researchers presumably take necessary measures to ensure ethical procedures, participants may not fully understand their rights or have enough knowledge about the research to make an informed decision (Broom, 2006). Educators must always be aware of the ethical aspects of any research when formulating a good research topic.  In one sense it may seem easy to just avoid conducting research that may be unethical, but it is always advisable to follow steps to ensure that no one is being harmed and that the published work will be ethically sound. This is especially true with qualitative research that often involves looking into the lives of the subjects. Even with quantitative studies, the data is often of a sensitive nature and researchers must take steps to ensure that subjects’ rights are protected (Creswell, 2012).

The American Psychological Association’s Science Directorate recommends five steps to help researchers avoid unethical problems (Smith, 2003).  One of the first steps is about intellectual property, which must be discussed with the other researchers and graduate students that may be contributing as well. The APA Ethics Code advises that researchers and faculty discuss the contributions of each and have the relationship in writing (Smith, 2003).  Even when the research is published, if the authors find errors, they are ethically obligated to correct them (Smith, 2003).

The second step is to be conscious of multiple roles and avoid relationships that could impair the professionalism of the research (Smith, 2003). Professors should not coerce students to participate either as graduate student co-researchers or subjects (Smith, 2003). All understandings and agreements should be committed to writing and specific assignments for each outlined in writing (Smith, 2003).

Third, the APA Ethics Code recommends that researchers follow all informed-consent rules (Smith, 2003).  This process should ensure that individual subjects have volunteered to participate in the study and are aware of the risks and benefits (Smith, 2003).  Participants of research should be made aware of the following items delineated by the APA Ethics Code: 1) the purpose, duration and procedure of the research, 2) rights to decline at any time of the research, 3) potential risks, adverse effects or discomforts associated with the study, 4) possible benefits of the research, 5) confidentiality limits, when data is shared, and how it is shared and stored,  6) participation incentives – monetary or other, 7) Contact person for any questions during or after the study (Smith, 2003).  Informed consent forms must be signed, and explained as well. The 2002 APA Code of Ethics states that there are two instances when psychologists can skip the informed consent – if permitted by law or when research  “would not reasonably be expected to distress or harm participants” and involves “the study of normal educational practices, curricula or classroom management methods conducted in educational settings.” (Smith, 2003) 

The fourth recommendation is for researchers to be aware of confidential information and privacy rights of participants (Smith, 2003).  Researchers must know federal and state laws with regard to research ethics. The Goals 2000: Education Act of 1994 prohibits researchers from asking children about their religion, family life and anything about sex, without parental consent (Smith, 2003). Researchers should plan ahead and take steps to secure all critical records, be careful in how it is shared and how it is transmitted (especially in the digital internet age) (Smith, 2003).

Fifth, the APA Ethics Code recommends that researchers stay up to date with current codes, laws and rules (Smith, 2003). In 2010, the APA has updated the 2002 Code of Ethics with some amendments.

Other scientific and professional organizations have developed guidelines for ethical research (Horner & Minifie, 2011).  The Office of Research Integrity places ethical research as a priority in its articles (Horner & Minifie, 2011). Due to the history of unethical practices, more agencies have become involved to protect the innocent (Horner & Minifie, 2011).

Unfortunately, the government by the people and for the people has often been the instigator and source of research that violates ethical principles. This is difficult to grasp – that federal and state laws can circumvent the ethics standards that are instituted by groups such as the American Psychological Association (Smith, 2003).  During the 1960s, Henry K. Beecher, Harvard School of Medicine Professor, exposed 22 examples of research that he deemed unethical in the New England Journal of Medicine (Gaw, 2012).  Maurice H. Pappworth, medical doctor in the United Kingdom published 200 unethical cases during this same time period (Gaw, 2012). Of interest is the testimony of Dr. Howard M. Spiro in a letter to the editor of the May 2012 Annals of Internal Medicine, where he shares the unspoken compact between doctors and patients (Gaw, 2012).  He was a graduate of the prestigious Harvard Medical School and intern at Brigham Hospital in the 1940s, yet he shared that “we took care of them [ward patients] for free, and in return they gave us their bodies to study.” (Gaw, 2012).  He explained that they, as medical doctors in Boston, were always respectful of life and compassionate towards patients, but had no concept of the “informed consent.” (Gaw, 2012).  They did not see themselves as the Nazi doctors implied by Pappworth (Gaw, 2012).

Eugenics played a role in unethical studies throughout the ages and often was based on perspectives of the era about certain types of people – be that a race or mental capacity. Governments in North America adopted practices that involved the sterilization of “mentally deficient” patients without their consent (Park & Radford, 1998).  By 1920, sterilization without consent was legal in 16 states in the United States and parts of Canada, under the assumed belief that there was some danger in passing on the genetics of those with abnormal behavior and intelligence (Park & Radford, 1998). Scientists seemed to focus on the theory of survival of the fittest and the overall belief of the good of society rather than the sanctity of life. After World War II, the Canadian National Committee for Mental Hygiene (CNCMH) surveyed the provinces to determine the number of people with ‘feeblemindedness’ which were used to justify the sterilization programs of 1928 (Park & Radford, 1998).  Research in this area requires the reader to look at individual case studies and try to understand the thinking of the time – which reached its height around the 1960s (Park & Radford, 1998). However, the patients’ voices are not part of any of these case studies, which does not give a full view of what was happening (Park & Radford, 1998). When the government takes responsibility for it’s citizens and provides the money and care, they ultimately make decisions based on what is best for the government and country. Because of the prevailing beliefs during this time period, researchers employed by the government often used mentally deficient subjects for their studies. While many of these instances of sterilization do not constitute a formal research study, those involved deemed these patients as subjects. Reviews of cases in Alberta, Canada reveal that families could commit teens to Provincial Mental Hospitals when they did not get along at home – ‘bad tempered in her own home.’ (Park & Radford, 1998). The overarching belief was the need to sterilize those that may pass these genes on to the next generation (Park & Radford, 1998). Young women were sterilized for reasons as simple as being on welfare or under the care of the government (Park & Radford, 1998).  However, case studies also reveal sexual behavior that constituted rape and assault – which understandably invoked human emotions to curtail criminal activities that affected other people (Park & Radford, 1998). The huge span of what constituted mental illness had a bearing on these case studies where government boards and individual investigators made decisions without a subject’s consent (Park & Radford, 1998).  Similar cases have been revealed involving American natives that were sterilized by the government without informed consent, or consent obtained through coercion (Hodge, 2012).  Often at the core of reasoning for these procedures, was the belief that this helped control population and reduce racial tensions and the tax burden (Hodge, 2012). The federal Indian Health Services performed appendectomies that also included sterilizations without consent (Hodge, 2012).

The Tuskegee Study involved the unethical approach of studying syphilis in the Alabama Black, male sharecroppers in the United States during the era of 1932 to 1972 (Horner & Minifie, 2011). The men thought they were receiving healthcare from the government but in actuality they were part of a study – comparing those with syphilis to a group without the disease (Horner & Minifie, 2011). Even when penicillin became the drug of choice in the 1950s for treating syphilis, the researchers failed to treat their study subjects with the antibiotic, offering instead healthcare and meals (Horner & Minifie, 2011). The sanctity of life for these groups of people was not valued, but instead they were considered at the disposal of the government for research because they were receiving government aid. Often, the staff would employ a Black nurse to convince the Black sharecroppers to participate (Horner & Minifie, 2011).

Unethical studies often involved the population that were feeble, poor, at the mercy of the government, racially different, or considered mentally deficient (Horner & Minifie, 2011).  Even with the Hippocratic oath of 470-360 B.C.E., to ‘do no harm’; medical research and researchers have had differing opinions interpreting this oath and obligation (Horner & Minifie, 2011).  In the 1950s to 1970s, researchers at the New York state school, Willowbrook injected the live hepatitis virus in mentally retarded children under the auspices of valid medical research (Horner & Minifie, 2011).  This deliberate infection of children and then trial treatment with gamma globulin constituted unethical procedures. The government offered spaces in the school to parents of mentally deficient children if they agreed to participation in the study, which could be termed coercion, in that the poor were unable to receive help in any other way (Horner & Minifie, 2011).

During the 1960s, researcher Stanley Milgram conducted studies at Yale University to determine authority and obedience responses in subjects that constituted an unethical study (Benjamin & Simpson, 2009). The subjects were college students that were divided into groups – some were given the role as learner or administrator (of a shock when the learner did not respond correctly). The learner was a ‘confederate’ in that they knew they would not be shocked, but they were to pretend to receive the shock, which would appear real to the subject that administered the shock (Benjamin & Simpson, 2009). Milgram found that the participants were willing to give higher shocks out of obedience to his direction, even at the cost of what seemed painful and unethical (Benjamin & Simpson, 2009).  The fact that deception was used as part of the study contributes to the side of unethical research.

In 1939, a graduate student at the University of Iowa conducted a research study about the effects of labeling orphaned children (ages of 5 to 16) as stutterers (Horner & Minifie, 2011). Tudor (the researcher) found that she could induce stuttering in otherwise normal-speaking children by using adverse responses from others and using the label of ‘stutterer’ (Horner & Minifie, 2011).  Tudor invoked the help of the orphanage staff to cooperate in the deception and call the normal speakers stutterers, which involved unethical measures of causing possible harm (Horner & Minifie, 2011). Years later, surviving subjects reported lasting psychological damage and hesitant speech patterns in a study that had no potential benefits for its subjects (Horner & Minifie, 2011).

Another area of concern in the ethics of research is the aspect of paying subjects for their participation in studies that may constitute risk and adversity (VanderWalde & Kurzban, 2011). This side of what constitutes ethical research includes the broad spectrum of taking advantage of people who are in need of monetary assistance and may even fall under the auspices of coercion (VanderWalde & Kurzban, 2011).

An unethical study similar to the Tuskegee case emerged recently when a professor of Wellesley College discovered an unpublished research of syphilis in Guatemala from 1946 to 1948 and supported by United States government (U.S. Public Health Service), the Pan American Sanitary Bureau and the Guatemalan government (Scheperle, 2012).  The uninformed subjects of this study were made up of prisoners, soldiers, orphans and mentally deficient patients in an asylum (Scheperle, 2012).  The participants were unknowingly infected infected with syphilis and then later treated with penicillin (Scheperle, 2012). Once again, this study the unethical practice of using subjects without their knowledge and taking advantage of the less fortunate who could not otherwise defend themselves.

The importance of research and the ethical methods of conducting and analyzing data remain obvious considering the history. Individuals who conduct and train others in the field of exploration and discovery must understand their responsibility to others and society (Lategan, 2012). However, once the initial approval for a research study is received, researchers may let ethical principles slip during all stages of the study (Lategan, 2012). According to Lategan (2012) there could be a void in the supervising of research teams and post-graduate students. Universities should have an ethical code in place and those conducting research should have the desire to live up to those expectations of honor (Lategan, 2012). Along with the oath of ‘do no harm’ Lategan (2012, p. 9) advises “no power relationship should be exercised between lecturer and student” which should extend into all areas of research. Other areas that need to be included in ethical practices include the use of hazardous material, execution of discipline, conflict of interest, privacy, risk, funds and equipment, authorship, use of data, integrity of data, unfair benefit, creation of knowledge, research teams, postgraduate supervision, teaching and learning, paradigmatic choices, and dictum of no harm (Lategan, 2012). 

Ethical codes are available in various professions and include the American Educational Research Association (AERA), the Joint Committee on Standards for Educational Evaluation, the American Anthropology Association and the American Psychological Association (Creswell, 2012).  Overall researchers should take care to treat individuals with respect and cultivate a feeling of giving back to the community. Creswell (2012) gives the example of sharing book royalties with subjects in an HIV study. Researchers will vary, but the honest will reach to fulfill the demands of discovering new advances and at the same time value the life of those involved in that quest.

References

Angelski, C., Fernandez, C. V., Weijer, C., & Gao, J. (2012). The publication of ethically uncertain research: Attitudes and practices of journal editors. BMC Medical Ethics, 13, 4-4. doi: 10.1186/1472-6939-13-4

Benjamin, L. T. J., & Simpson, J. A. (2009). The power of the situation: The impact of Milgram's obedience studies on personality and social psychology. American Psychologist, 64(1), 12-19. doi: 10.1037/a0014077

Broom, A.Ethical issues in social research. Complementary Therapies in Medicine, 14, 151-156. doi: 10.1016/j.ctim.2005.11.002

Creswell, J. (2012). Educational research: Planning, conducting, and evaluating quantitative and qualitative research. Upper Saddle River, NJ: Pearson.

Gaw, A. (2012). Exposing unethical human research: The transatlantic correspondence of Beecher and Pappworth. Annals of Internal Medicine, 156(2), 150-155. doi: 10.1059/0003-4819-156-2-201201170-00012

Hodge, F. S. (2012). No meaningful apology for American Indian unethical research abuses. Ethics & Behavior, 22(6), 431-444. doi: 10.1080/10508422.2012.730788

Horner, J., & Minifie, F. D. (2011). Research ethics I: Responsible conduct of research (RCR)--historical and contemporary issues pertaining to human and animal experimentation. Journal of Speech, Language & Hearing Research, 54(1), S303-S329. doi: 10.1044/1092-4388(2010/09-0265)

Lategan, L. O. K. (2012). The building of a responsible research community: The role of ethics. Journal of Research Administration, 43(1), 85-97. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=eric&AN=EJ976743&site=eds-live; http://www.srainternational.org/sra03/template/tntbjour.cfm?id=3010

Park, D. C., & Radford, J. P. (1998). From the case files: Reconstructing a history of involuntary sterilization. Disability & Society, 13(3), 317. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=edb&AN=14018767&site=eds-live

Pocock, S. J. (2012). Ethical dilemmas and malfunctions in clinical trials research. Annals of Internal Medicine, 156(10), 746-747. doi: 10.1059/0003-4819-156-10-201205150-00015

Scheperle, M. C. (2012). The Guatemala STD inoculation study as the incentive to change modern informed consent standards. Washington and Lee Journal of Civil Rights and Social Justice, 18, 425. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=edslex&AN=edslex0675B3ED&site=eds-live

Smith, D. (2003). Five principles for research ethics. Monitor American Psychological Association, 34(1), 56.

Spiro, H. M. (2012). Exposing unethical human research. Annals of Internal Medicine, 156(10), 754-754. doi: 10.1059/0003-4819-156-10-201205150-00022

VanderWalde, A., & Kurzban, S. (2011). Paying human subjects in research: Where are we, how did we get here, and now what? Journal of Law, Medicine & Ethics, 39(3), 543-558. doi: 10.1111/j.1748-720X.2011.00621.x

Wester, K. L. (2011). Publishing ethical research: A step-by-step overview. Journal of Counseling & Development, 89(3), 301-307. Retrieved from http://search.ebscohost.com/login.aspx?direct=true&db=ehh&AN=62807988&site=eds-live