Qualitative Research: Ethical Considerations
6.5 Future Challenges for Content Analysis
occur, and polyphonic discussions that address the balance between these require- ments are necessary to resolve these conflicts [50]. Additional weaknesses of this framework include that it does not require an evaluation of researchers’ compe- tency, does not specify that researchers should evaluate the feasibility of gaining sufficient research funding, and requires only research ethics committee mem- bers, and not researchers, to declare possible conflicts of interest in the review process [43].
be the protection of the subject. Ethics can be described as an attempt to understand what is good and how this can be achieved. Several changes in research practice have demonstrated how study subject privacy and personal data confidentiality have become increasingly important themes within the research community. Nevertheless, the protection of privacy is more challenging than ever in today’s research environ- ment [27].
Qualitative research methods, for example, in-depth interviews grant research- ers the privilege of viewing study participants’ lives and experiences in great detail. However, qualitative researchers face unique, and often ambiguous, ethical dilemmas in disseminating these rich data. One such dilemma involves finding the right balance between conveying detailed, accurate accounts of the social world, and protecting the identities of the individuals who live in that particular social world [51].
Recent research has identified six issues that will challenge research ethics in the coming years, namely, the evolving nature of health data in clinical research, the sharing of health data, the anonymisation of data, collaboration among stakeholders, complex regulation, and ethics-related tensions between social benefits and privacy [27]. Concerning the matter of privacy, a researcher should not solely rely on the participant to identify possible intrusions to privacy, but work to anticipate potential risks in advance. Confidentiality does not necessar- ily preclude intrusion, as anonymity by itself is not enough to protect a person’s privacy or prevent the disclosure of personal issues. Investigators should refrain from soliciting private information that is not closely related to the research question [52].
Qualitative Research Data: Anonymity and Confidentiality Using research that involved in-depth interviews with family members of people in vegetative and mini- mally conscious states as an example, this section discusses the issues researchers face when trying to ensure participant anonymity and maintain data integrity. The anonymisation of data is a constant compromise: sometimes researchers have to sacrifice some of the data integrity to maximise anonymity while at other times researchers have risked compromising anonymity to maintain data integrity. This shows that despite a researcher’s best efforts, anonymity cannot be completely guar- anteed [53].
Conducting qualitative research in online settings also raises questions about confidentiality and whether researchers should be responsible for maintaining the privacy of participants who have shared personal narratives in publicly accessible online settings [54]. The increasing use of social media (both by research partici- pants and researchers), popularity of open access publishing (a condition of certain funding sources), and growing public engagement efforts among researchers all pose relevant confidentiality problems [53].
It is also important to mention that qualitative research has the potential to harm study subjects through, for example, intrusion into personal privacy, embarrass- ment, arousal of distress, or breaches in confidentiality [46]. Furthermore,
researchers should be aware that the increased use of information technology, as well as how it can be exploited to collect, analyse, and disseminate information on individuals, has brought about new kinds of privacy threats [55–57]. At the same time, technology now allows researchers to gather highly detailed medical informa- tion from any individual [58].
Sharing Personal Information: Potential Risks and Benefits Advances in infor- mation technology have also led to an increasing number of people sharing highly personal information online, which could jeopardise their control of per- sonal data [59, 60]. This issue is compounded by the fact that some may not completely understand what personal information is [61], how personal data from various sources can be combined, and the risks and benefits of sharing health data on the Internet [59]. In addition, individuals are often poorly informed about how their health data may be used for secondary purposes [59, 62]. Studies have found that few people are fully aware of how their health data are handled and used [63, 64].
Previous studies have also found that individuals are willing to share their data for research purposes without displaying concern about privacy breaches.
This is especially relevant if the research participant feels that the research will benefit the public and trusts the individual or organisation conducting the research [63]. Mulligan, Koopman, and Doty [65] have recognised changes in the nature of privacy based on evolving technological and social conditions. The authors concluded that the public should be adequately informed about how personal health data will be used and the related risks through educational and informa- tional campaigns [63, 64].
However, as mentioned before, qualitative researchers face unique, and often ambiguous, ethical dilemmas when disseminating study results. For example, researchers are commonly challenged to convey detailed, accurate accounts of the social world while simultaneously protecting the identities of their study subjects [51]. Furthermore, ethical challenges, for example, anonymity, confidentiality, informed consent, and researchers influencing study subjects, are prevalent at every stage of research, from study design to the reporting of results. Hence, health care providers, educators, and clinicians must be well informed of all the responsibilities that accompany acting as a qualitative researcher [52].
How Can Researchers Provide the Highest Quality Evidence for Practice? Every researcher is expected to be able to achieve good scientific practice. Furthermore, it must be understood that one of the key parts of conducting research is protect- ing the subject. A researcher must remember that their research subjects are human beings, and grasp the importance of face-to-face encounters and non- verbal communication. When two people meet each other, ethics are always involved. Thus, it is important for researchers to consider how ethical principles are incorporated into the research process, from planning the study to dissemi- nating research results. Heale and Shorten [5] highlight that understanding and
applying ethical principles is critical when planning and conducting research, and will ensure that the research produces the highest quality evidence for prac- tice [5].
Scientists have a moral duty to promote good practices and to not harm others.
Respect for autonomy is manifested by confidentiality, honesty, and a respect for others’ privacy. Justice covers equal consideration of all individuals. Structured ethical frameworks can help researchers to practice and identify ethical principles in research, which will enable them to conduct research according to ethical standards.
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