Questions to ask about research
ENSURING THE PROTECTION OF HUMAN PARTICIPANTS Every researcher has a responsibility to protect the participants in an investigation. The Ethical Principles of Psychologists and Code of Conduct that psychologists must be concerned with the welfare and protection of the individuals and groups with whom psychologists work and the education of members, students, and the public regarding ethical standards of the discipline. It is of paramount importance that educational researchers respect the rights, privacy, dignity, and sensitivities of their research populations and also the integrity of the institutions within which the research occurs. Educational researchers should be especially careful in working with children and other vulnerable populations psychology and education, respectively, social science and educational research involving many other fields of study where professionals serve in multiple roles Whether a researcher is a psychologist, educator, or anthropologist, the primary responsibilities to participants are clear: obtain consent, protect from harm, and ensure privacy. However, there is one area of responsibility that is often less clear for both the researcher and the participants: intentional deception. These areas are covered in more detail below.
Participating in research
The kind of study and the goals of the researchers will determine to a large extent what is expected of participants. However, irrespective of the precise nature of the study, the researchers will have a clear plan of what they want to do, how, when and for how long. For clinical trials, this is called the protocol. These issues should have been discussed with participants and informed consent obtained before the start of the study. However, to give informed consent, participants must have received and understood all the relevant information linked to the proposed study. It is the researchers’ responsibility to provide such information but participants are free to ask for further clarification and information. The following box contains examples of questions that people might want to consider asking before consenting to take part in research studies or clinical trials.
Topic/issue Purpose of the research. Why is this study/trial being conducted? What do the researchers hope to discover?
Procedure. What is involved (e.g. hospital stays, visits to the doctor, injections, blood tests and scans etc.)? Is any of this likely to be stressful, uncomfortable, burdensome or painful? What is the likelihood that I will receive the experimental drug (in the case of clinical trials)? How long will the study/trial last? Where will I have to go and how often?
Benefits and risks. Are there any benefits or risks involved in this study/trial? Am I likely to personally benefit from participating in this study/trial?
Consent. What are my treatment or care options if I decide not to participate in this study/trial? Can I withdraw at any time? Will my wish to withdraw be respected even if I am considered as lacking capacity at the time?
Continuing care. How will participation in this study/trial affect my current care? How will participation in this study/trial affect my future care?
Safety. What are the likely side effects? What will happen if I suffer side effects? If anything goes wrong, would I be covered by some kind of insurance? Who is responsible for the safety and wellbeing of participants? Whom can I contact in case of emergency or if I wish to complain?
Confidentiality. Who will be informed that I am participating in this study/trial? Who will know whether I am receiving the experimental drug? Will personal information about me be kept on a computer or in a report? If so, will my anonymity be respected? Would I be bound to secrecy in any way? How will the results of the study be presented and used? Will I be informed of the results of the study afterwards?
Payment. Is there any payment to compensate participants for their time? Are travel costs and other related expenses covered? Does anyone receive compensation of any kind for my participation in the study/trial?
Restrictions. Is there anything I should or shouldn’t do during the study/trial? Can I also take authorised drugs for dementia during the study/trial?
Ethical issues, conflicting values, and ambiguity in decision making ethical standards, nurses must develop an awareness of these issues and an effective framework to deal with problems involving human rights. This is necessary to come into terms with the issue of the researcher's values relative to the individual's rights versus the interests of society. Professional codes, laws, regulations and ethics committees can provide some guidance but the final determinant of how research is performed rests with the researcher's value system and moral code. To prepare future nurses, ethics in research must receive special attention in nursing curricula.