The word research can have many connotations and interpretations. Just reading a book, which states some facts, can be a kind of research also. It varies from subject to subject and is based on the objective of the researcher. In a broad sense any kind of work involved with collecting data or gathering information to gain more perspective on any given subject can be classified as research. When we focus only in the aspect of scientific research, Shuttleworth (2008) offers the definition of scientific research as, “ performing a methodical study in order to prove a hypothesis or answer a specific question” (para. 3). He further stresses on the finding of a definitive answer as the basis of research. This kind of research is not new to us. We have heard of, participated in or read about the evidence provided by such research. Some of the research done on various subjects’ calls for anonymity by the researcher in order to get the desired results. For example in the case of a research on behaviours, a researcher will need to stay anonymous if he or she were to infer on behaviours of people in natural circumstances. There are others where there is a complete need for disclosure to the person or persons being researched especially when research of the medical kind are being conducted on humans. There is a point where the ethical line draws thin and gets manipulated by researchers as a means to an end. At this point there is a definitive need to impose certain fundamental principles that researchers should follow in order to not encroach on another’s classified information or privacy and to make sure that their subject of research is not compromised.
In this essay we will review research methodologies as observed in three fields of research and examine how the research principles vary according to the subject and the moral and ethical issues that may rise can be handled. We will also ascertain how these principles can be applied in future research. The three areas chosen for this articles are research in the area of clinical tests especially involving research on humans, nursing research and research on Internet committees.
Research on Humans
When it comes to research the ones that have to be handled with the most amount of sensitivity is medical research of humans. While it is not an issue where emotional boundaries are crossed it is one of paramount importance as it can have disastrous effects if not handled with proper protocol. The issue we will discuss here is an article by Lori Alvino (2003), Who’s watching the watchdogs?Responding to the Erosion of Research Ethics by enforcing promises. The name of the article is self-explanatory. The watchdogs here are a direct reference to clinical research on humans. Right at the introduction we are given a sense of the seriousness of the situation when reporting a research done at John Hopkins Asthma and Allergy Center. The volunteer Ellen Roche died after inhaling a medication that was used to research treatments for asthma. The issue here was that the researchers failed to follow federal regulations and did not inform the research subjects and did not submit relevant information regarding side effects that they had encountered in past research of the same drug. Previous research on the same drug had exhibited the same “pulmonary toxic effects” that Ellen had experienced finally leading to her death. (Alvino, 2003. P. 894).
Therefore we see the ethical issue here is the lack of appropriate recording and submission of literature on clinical trials. The drug in question was also not FDA (Food and Drug Administration) approved. This brings us to the subject of “Common Rule” as explained by Alvino (2003) which was designed to offer protection to human research subjects and one which has been active for over 30 years. Therefore there is a requirement for research agencies to submit complete reports detailing the objective of the research, specifics of the drug that is being tested in order to get federal funding.
In exchange for federal funding from one of these agencies [Department of Health and Human Services (DHHS)], a research facility must submit a Federal Wide Assurance (FWA) to the department or agency from which funding is sought. The FWA is a contract in which the research facility promises to abide by the Common Rule for all of its research that involves human subjects, whether it is privately of federally funded (Alvino, 2003. p. 894)
We are aware that these regulations have been in force for thirty years, therefore it is apparent that the regulations have been breached in the above-mentioned case of Ellen. The concerning aspect in clinical trials is that it does not rule out the possibility of patient dying during trial. Therefore even if the research adhered to regulations, there is still an unresolved issue of protection of the research subjects. The only way to control the unfortunate outcomes is by making sure that the research institutions maintain up to date files and information with the FWA. This can in turn control the various other factors related to the drug being tested. The Common Rule also requires that research being conducted on humans be monitored by at least five members of the Institutional Review Board (IRB). They can oversee and make sure that all safety precautions are taken during the trials. (Alvino, 2003,p.901).
There is also the thin line between informed consent and desperation. Terminally ill patients may make an emotional decision against the will of their family or advisors because they have developed a trusting relationship with the caregiver. Therefore there is the ethical issue of which one should be given credence, the emotional and suffering patient or the objective well-wishers? Medical research in recent years has also advanced way beyond the capabilities of the IRB, thereby eliminating even that safety factor in such research. Alvino (2003) also mentions conflict of interest as another aspect of concern here. “The sharp increase in privately funded (i.e., industry sponsored) research has created an atmosphere that breeds conflicts arising from compelling financial incentives. These conflicts may arise from researchers’ financial relationships with companies whose products they are studying” (p. 906). This conflict is regardless of the fact whether the research is funded by the government or by the company itself. The biggest issue in human trials is that subjects can have a hard time proving in court that their injury is related to the research and even if it is ascertained that the research did not adhere to federal regulations there is guarantee that the injured subject will receive treatment or recover from their injury. Therefore “causation and damages” are still a problematic aspect in human clinical trials. (Alvino, 2003. P. 912). There is also no evidence that suggests that experiment subjects are the direct beneficiaries of such research. Alvino (2003) suggests the benefits of a third party beneficiary because of limited federal jurisdiction over privately funded research. Such limitations cannot assure the safety of human trial subjects just by regulatory schemes, therefore at least the legal tool offered to third party research can provide some amount of safety and benefits.
Qualitative research in Nursing
The next article we will research is Lois R. Robley’s (1995) article on The Ethics of Qualitative Nursing Research. The issue that Robley addresses in this article is the sensitive issue of nurse researchers who conduct research on patients undergoing a particular care in a medical facility. It is norm for such research to be focussed on women or minorities, as it is commonly believed that analysis made on their viewpoints could reveal loopholes and give accurate evaluations of the quality in patient care. A few ethical issues are addressed here. The sensitivity of the people who are being researched, the trust relationship that the nurse researchers have with the patients or the research participants in this case and the degree of informed consent that should be obtained. Robley(1995) feels that these issues are more prominent in qualitative research methods than quantitative research as in the latter the researcher is removed or detached from the subject thus eliminating certain ethical issues (p.45). Unlike other kinds of qualitative research, research in nursing poses a different kind of ethical problem due to the personal relationship the subject shares with the nurses. Although it can be said that protocol was followed on how the subjects were invited, and how the researcher briefed them on the research subject, it can still be tantamount to infringing on the personal rights of the subject. It is never clear in such kind of research as to whether the subject was giving consent to the nurse who they shared a close bond with or the nurse researcher. “In duty-based ethics of nursing, individuals are seen as ends in themselves. Although this problem may seem endemic to all research involving humans, it is particularly evident and acute when there is a close trusting relationship built between people.” (Robley, 1995, p.45-46). Apart from this ethical issue there is also the sensitivity of the subject to be taken into regard. Some patients who participated in the research may be emotionally attached to some of the issues being researched and at times when these emotional responses escalate the nurse researcher should be prepared to switch between her roles effectively whilst still not harming the research.
This sensitivity can also extend towards the data collected. An emotionally charged subject may reveal personal matters forgetting that the person who they are sharing with is a nurse researcher and not the nurse whom they have a trusting relationship with. In such research it is also required that the data be expressed without distortion of facts. Therefore the ethical dilemma here to arrive at a balance where the subjects privacy is not compromised while staying true to the research parameters as well. Robley (1995) suggest in this case adopting a two-fold methods for data collection and compilation. If the narrative requires a certain information then to “retain it and return to the respondent for permission, verification, and justification.” (p.48). We cannot ignore the fact that one body most often does not govern research. There are many facets to research, which have to be addressed, the nurse researcher, the funding agency of the research and the end benefactor from the research. Therefore such ethical blockades need to be anticipated and all parties involved have to be prepared for it beforehand. The nurse researcher needs to care for as much as the subject. Therefore a close dialogue between the ethics committee of the research and the nurse researcher will help guide him or her through the process and help them to be prepared for the consequences. “She can use de- briefing to explore personal responses and weigh risk/ benefits. Personal education in ethics and consultation with experts when it is believed that the nurse- researcher is being hurt is advocated.” (Robley, 1995. P. 48)
Qualitative research on Internet communities.
With the onset of social media and with people sharing personal details with each other, one would imagine that research on Internet communities would not have as many ethical issues as others. Gunther Eysenbackh and James E. Till (2001) in their article “Ethical Issues In Qualitative Research On Internet Communities” explain the many ethical issues that may crop up when conducting such qualitative research. The main area of conflict here is the aspect of obtaining informed consent as we discussed before “borders between public and private spaces are sometimes blurred.”(p.1103). The private spaces here would be closed groups or forums which discuss sensitive topics and share personal information within a group of people that they trust within the internet community. Depending on the kind of research needed a researcher may have to stay anonymous and participate in discussions in order to obtain data. This is a clear breach of the privacy and personal rights of the research subjects especially since they are unaware that they are participating in a survey or a research program. Despite this there have been reports of how researchers of such online communities fail in their process, as they are unaware of the culture of that particular community or even the Internet in general. Eysenback and Till suggest two ways of solving this issue. One is to get into a group and open the research topic as a separate discussion and provide all the information about the research, its purpose and methodology so that people who enter into the discussion can be then assumed to be those who have given informed consent to the research. This informed consent can be obtained through mailing lists by giving those who do not wish participate to withdraw from the discussion. This may pose a problem to the quality of the research, as there is no opportunity for the research to observe his subjects in their natural surroundings. To explain it from the standpoint of an Internet community, Subjects who enter into such a discussion willingly may not be true to their nature and therefore not contribute truthfully to the research. This approach still does not solve the ethical issue of privacy, as there is no way to control the entry of new members into the group. Therefore this would work in groups where the signing in of new members can be monitored or the researcher can send individual emails and invite individuals to participate. We cannot however ignore here that the fact that the researcher was able to gain access to the mailing list by either the moderator or owner of the list in itself is an infringements into privacy. This approach cannot be considered as obtaining complete informed consent because the basic rights have already been breached. This kind of approach could however solve the issue of cultural incompatibilities between the researcher and the Internet community being researched upon as the moderator could advise the researcher on accepted cultural behaviour.
Handling of the data accumulated over the Internet poses ethical issues that have not been resolved yet in qualitative research. Quoting someone verbatim, despite having obtained informed consent still exposes the subject to the public beyond the boundaries of the research. “This is because powerful search engines such as Google can index newsgroups (groups.google.com), so that the original message, including the email address of the sender, could be retrieved by anybody using the direct quote as a query.” (Eysenbach et al, 2001. P. 1105). Therefore it is important that the researcher anticipates this issue and obtains exclusive consent to quoting verbatim as well. The researcher cannot also assume that just because the subject is contributing to information online, that he or she is looking for public visibility.
Therefore we see the issue of ethics rising in Internet research because of the thin line between what can be considered intellectual property and what is personal information. There are also many psychological aspects of the participants to be taken into account.
References
Personal viewpoints on Research ethics.
Alvino A.Lori (2003). Who’s Watching the Watchdogs? Responding to the Erosion of
Research Ethics by Enforcing Promises. EBSCO Publishing.
Cryer Pat. (2006) The research student’s guide to success. McGraw Hill International.
Eysenbach Gunther and Till E James. Information in Practice. BMJ.com. Volume 323. 10
November 2001. April 01, 2012.
Gregory Ian (2003). Ethics in research. Continuum International Publishing Group.
Resnik. J.D David. What is Ethics in research & Why is it Important? National Institute of
Environmental Health Sciences. October 26, 2011. April 01, 2012.
http://www.niehs.nih.gov/research/resources/bioethics/whatis/
Robley R. Lois (1995). The Ethics of Qualitative Nursing Research. W.B. Saunders
Company.
Shuttleworth Martin. Definition of Research. Experiment-Resources.com. 2008. April 1, 2012
http://www.experiment-resources.com/definition-of-research.html#ixzz1qmI9ZPH8
