Designing Ethical Research

1. Designing Ethical Research Dr Aidah Abu Elsoud Alkaissi An Najah National University Faculty of Nursing

2. Historical Background • 1930- 1940: The Nazi Medical experiments: The nazi program of research involved the use of prisoners of war and racial ”enemies” in experiments designed to test the limits of human endurance (Continuing existence; duration) and human reaction to disease and untested drugs • The studies were unethical not only because they expose these people to permanent physical harm and even death but because subjects could not refuse participation • Examples of ethical transgressions (To go beyond or over (a limit or boundary 1932-1972the study of Tuskegee syphilis study investigated the effects of syphilis among 400 men African-Amrican community

3. Historical Background • Medical RX was deliberately (intentional) withheld to study the course of the untreated disease • The injection of live cancer cells into elderly patients at the Jewish chronic disease hospital in Brooklyn in USA without the conset of those pat • All of these examples have emerged to give ethical concerns the high visibility thay have today

4. Ethical Dilemmas in conducting research • There are reseach problems in which participants rights and study demands are put in direct conflict, posing ethical dilemmas for researchers • Examples of research problems in which the desire for rigor conflicts with ethical consideration • 1. Research question: how empathic (Identification with and understanding of another's situation, feelings, and motives) are nurses in their RX of pat in the ICU? • Ethical dilemma: ethics require that participants be cognizant (having or showing knowledge or understanding or realization)

5. Ethical Dilemmas in conducting research • If the researcher informs nurses participating in this study that there degree of empathy in treating ICU patients will be scrutinized (To look at or on attentively or carefully), will their behavior be ”normal”? If the nurses behavior is altered because of the known presence of research observers, the finding will not valid

6. Ethical Dilemmas in conducting research • 2. Research questions: what are the coping mechanisms of parents whose children have a terminal illness? • Ethical dilemma: to answer this question, the researcher may need to probe (To conduct an exploratory investigation) into the psychological state of the parents at a vulnerable (Susceptible to physical or emotional injury) time in their lives; such probing could be painful and even traumatic • Knowledge of the parents´coping mechanisms might help to design more effective ways of dealing with parents´grief and anger

7. Ethical Dilemmas in conducting research • 3. Research question:does a new medication prolong life in patients with cancer? • Ethical dilemma: the best way to test the effectiveness of an intervention is to administer the intervention to some participants but withhold it from others to see if differences between the groups emerge (To come into existence • If the intervention is untested (new drug)the group receiving the intervention may be exposed to potentially hazardous side effects • On the other hand, the group not reciving the drug may be denied a beneficial RX

8. Ethical Dilemmas in conducting research • Research Questions 4:what is the process by which adult children adapt to the day-to-day stresses of caring for a terminally ill parent? • Ethical Dilemma: suppose a participant admitted to physically abusing an adult parent------- how does the researcher respond to that information without undermining (Efforts to secure protection for local communities) a pledge (a deposit of personal property) of confidentiality If the researcher divulges (To make known (something private or secret) the information to appropriate authorities, how can a pledge of confidentiality be given in good faith to other participants

9. Ethical Dilemmas in conducting research • Researchers involved with human participants are sometimes in bind • They are obligated to advance knowledge and develop the highest quality evidence for practice, using the best method available • They must also adher to the dictates (a guiding principle) of ethical rules that have been developed to protect human rights

10. Ethical Dilemmas in conducting research • Another type of dilemma arises from the fact that nurse researchers may be confronted with-of-interest situations in which their expected behabiors as nurses comes into conflict with the expected behavior of researchers (e.g deviated from a standard research protocol to give needed assistance to a patient) • It is precisely because of such conflicts and dilemmas that codes of ethics have been develloped to guide the efforts of researchers

11. Codes of Ethics (is group.) • Nuremberg code, developed after the Nazi atrocities (a term used to describe crimes ranging from an act committed against a single person to one committed against a population or ethnic group) were made public in the Nuremberg trials • The declaration of Hilsinki, adopted 1964 by the world medical association and revised 2000 • The American Nurses´Association (ANA) put forth a document in 1995 entitled Ethical guidelines in the conduct , dissemination and implementation of nursing research • Pleae red page 144 box 7.1 • Belmont report: beneficence, respect to human dignity and justice

12. The principles of beneficence