Research Ethics

1. Research Ethics Summary

2. But what has ethics got to do with research? Is “pure” research above ethics and morality? Is ethics and morality to do with technology and politics (the appliance of research) not research itself?

3. The chain of discovery

4. The Impact of Research on Values and Values on Research • Ethical considerations are to the fore with the development of new technologies and new social systems • Society is inherently conservative and seeks to set the limits of research activity I’m damned if they are going to make me redundant

5. The scope of research ethics • Ethical considerations cover all aspect of research but they are fore-grounded when the subject of the research are humans or animals

6. Research involving human subjects in the Medical, Social and Behavioral Sciences poses complex ethical issues. • It requires careful thought and consideration on the part of both researchers and research participants. • Prospective participants must be given adequate information on both the possible risks and the potential benefits of their involvement to allow them to make informed decisions But it pays well It has its disadvantages

7. Ethical Issues • Justification for the research • Access to participants/Privacy • Informed consent • Potential harm

8. With research involving human subjects the risks and costs must be balanced against the potential benefits • Trivial or repetitive research is may be unethical where the subjects are at risk After years of experimentation the scientist proved that children become addicted to nicotine

9. Autonomy • The ethical principle of autonomy means that each person should be given the respect, time, and opportunity necessary to make his or her own decisions. • Prospective participants must be given the information they will need to decide to enter a study or not to participate. • There should not be pressure to participate.

10. Vulnerable participants • Potentially vulnerable participants such as children, the elderly, the mentally ill may be incapable of understanding information that would enable them to make an informed decision about study participation. • Consequently, careful consideration of their situation and needs is required, and extra care must be taken to protect them. • For example, how will you assess the diminished capacity of an elderly individual, who will be the guardian, and how and when will you involve another individual as guardian in the process?

11. The process of obtaining consent • Identify participant population • Produce information sheet and consent document • Obtain permission from school’s ethics committee • Present research information to participant and discuss its contents – indicating that withdrawal at any time is possible • Answer participants questions • Give a copy of the consent document • Allow the participant time to consider • Meet participant and discuss documents, to answer any more questions and assess participants understanding • Obtain appropriate signed consent • Start research

12. The participants • The participants may not have the experience or educational background in order to fully understand the implications of the research • They may be swayed because of their respect of and trust in the researcher who stands as an authority figure • If they are being paid for their participation they may be swayed by economic considerations from a free judgement of the risks

13. Peer pressure • The participants may be subject to social pressure of their peer group • This is particularly prevalent in research groups

14. Assessing Participant Understanding An important part of the process is for the researcher to ensure that the prospective participants understands the research, their role in it, and any risks they may be taking. During discussion the use of open-ended and nondirective questions (i.e. those that begin with words such as "what," "where," "how often," "when," and "please describe.“) is most effective at doing this .

15. A few of the questions you may want to ask are: • Describe in your own words the purpose of the study. • What more would you like to know? • Would you please explain to me what you think we're going to ask you to do? • What are your concerns? The idea is not to quiz the participant but to encourage an open exchange of information and encourage them to ask questions.

16. Contact Information Give the names of people who can answer questions about the research; include the principal investigator. If the researcher is a student, include the names and phone numbers of the principal investigator and, where applicable, the chair of the school ethical committee for questions. Furnish the contact name of a neutral third party who can explain the rights of research participants if the participant has any questions.

17. Withdrawal • Always stress the fact that participation is voluntary and that the participant can withdraw at any time • State that refusing to participate will involve no penalty or decrease in benefits to which the participant is otherwise entitled. • Emphasize that the individual may discontinue participation at any time without penalty or loss of benefits. • If there are limitations or risks involved in withdrawal, such as a danger to the participant's well being, these must also be clearly explained.

18. Ethical problems may arise The requirements of effective research sometimes conflict with the simple fulfillment of the obligation to obtain informed consent. For example • in psychological research information and fore-knowledge may bias the results

19. Reasons for limiting information • The most common reason for limiting information is that valid data could not be obtained if the participants were fully informed about the purposes and procedures of the research. • Methodological requirements of the research may demand that the participants remain unaware of the specific hypotheses under investigation. • In other situations, incomplete information or misinformation may have to be provided to elicit the behavior of a naive individual or to create psychological reality under conditions that permit valid inference.

20. Deception or concealment Fully informed consent cannot be obtained in some kinds of research without the possibility that the results may be biased In those circumstances where a methodological requirement may necessitates the use of concealment or deception, the researcher has a special responsibility 1. to determine whether the use of such techniques is justified by the study's prospective scientific, educational, or applied value 2. whether alternative procedures are available that do not use concealment or deception 3. that the participants are provided with sufficient explanation as soon as possible. These issues should be explored before undertaking the research with colleagues, supervisor(s) and the school/departmental ethics committee.

21. Risk assessment Research is by nature uncertain. • The researcher may not be fully aware of the possible hazards involved in the proposed research. • For example in the early stages of the development of new drugs their long term effects may not be known. • In these circumstances the participant may not be fully informed of potential risks.

22. The perception of risk is central to informed consent RISK A participant in research will probably not have the experience to perceive the risk directly and may be confused by mixed messages of virtual risk and so rely on the researcher’s understanding of risk

23. Consent Form I have read the Information Sheet and have had the details of the study explained to me. My questions have been answered to my satisfaction, and I may ask further questions at any time. I understand I have the right to withdraw from the study at any time and decline to answer any particular questions. I agree to provide information to the researcher(s) on the understanding that my name will not be used without my permission. I agree/do not agree to the interview being recorded electronically. I understand that I have the right to ask for the tape to be turned off at any time during the interview I agree to participate in this study under the conditions set out in the information sheet Signature – Name - Date • Might take the following form

24. Research design Most research is sponsored It is ethical behaviour for a researcher • to use resources efficiently and effectively • to work hard • to ensure the well-being of all colleagues and participants

25. Minimising the risksMaximising the potential for valuable results It is standard practise in research to carry out a preliminary small-scale project in order to enable • more effective assessment of risks • more efficient design of the main project

26. In fact two types of error can arise when considering whether or not to reject the null hypothesis

27. Failure of the research design • A research design that has a high chance of a Type II error is unethical because it wastes resources • Accepting the null hypothesis when it is in fact false can be an important consideration. • If you fail to reject Ho is that genuinely because Ho is correct? • Or is the power of the test inadequate?

28. The Mertonian norms • Communalism • Universalism • Disinterestedness • Originality • Scepticism

29. The ethical matrix • Provides a means of examining the ethical positions of all interest groups – ensuring equality of treatment (justice/fairness). • It helps to identify where one stronger principle might overcome a weaker one or where a compromise should be sought • Separates well-being, autonomy and fairness

30. Communalism One of the Mertonian principles of science is communalism that the results of research are public knowledge, freely available to all Research to provide public knowledge, freely available to all But what about • secret government research? • secret commercial research? Who owns the results - patents ? The Diggers believed that the land belonged to everyone

31. Who owns the information? However the participants in research have a right to privacy Alternatively much research is private, owned by the funder of the research either the government or a commercial concern The conflict between privacy, confidentiality and the public access to knowledge creates an ethical arena “Who owns the information?”

32. Secrecy

33. Whistle-blowing • Researchers are in a privileged position • They may come across information about wrong-doing or danger to the public • The reporting of this information may go against any confidentiality agreement • The reporting of such information is likely to damage their career • The Public Disclosure Act 1998 protects certain classes of workers from the consequences of whistle-blowing

34. Confidentiality • Confidentiality of electronically stored participant information. • Appropriate selection and use of tools for analysis of the primary data • Who has access to the data • Data protection act

35. Universalism There are no privileged sources of scientific knowledge • Race, sex, politics ? • Specialism ? • Authority ? But certain classes and ethnic groups are under-represented in research.

36. Disinteredness Science is done for its own sake How impersonal is research in practice ? Research is competitive, not just in the search for funding but also for status. • High achieving researchers tend to be highly ambitious? • Personal feuds are rife in academia ? For example in disputes over priority ?

37. The same academic institutions that are responsible for oversight of scientific integrity and human subjects protection are entering financial relationships with the industries whose products which might directly impinge on these.

38. Knowledge for its own sake • A belief that scientific knowledge is politically and ethically neutral is challenged by the misuse of scientific knowledge

39. Originality Science is the discovery of the unknown • Plagiarism ? • Publication of the same results in multiple journals ? • Routine “stamp-collecting” surveys ?

40. Sceptical • Is sceptical of given opinions • Challenges accepted views

41. Research is social activity • Research is not just a method and a system of organised knowledge • It is a social activity carried out by groups of competing/co-operating/communicating scientists

42. Three dimensions of academic research community ‘meeting’ ‘authority’ ‘controversy’ ‘publication’ ‘sincerity’ ‘theory’ ‘experiment’ person knowledge

43. The participation of colleagues • A key consideration concerns the status/rank/class of not just subjects but all participants including colleagues • This will influence the ethical relationship/responsibility of the researcher. Not all people are equal. • Colleagues may vary from superiors such as project leaders, “equals” but with varying degrees of experiences and status, to technicians and support staff. There is a special responsibility to colleagues with less experience or of a lower rank who may find it more difficult to refuse to participate.

44. Ethical relationships with supervisors • The relationship between the student and the supervisor is unequal and hierarchical. • the supervisor plays many roles as "adviser", "promoter", "boss", "teacher", "friend", "principal investigator” etc. • This multiplicity of roles may lead to conflict • the relationship may be or may seem to be co-ercive abusive • A student must feel free to make their own decisions

45. Ethical supervision • Non-coercive • Nurtures the student’s confidence and skills • Permissive • Does not use the student just as a technician or assistant but allows the student to develop the project in new ways • Not jealous of the student’s success but allows the student to take ownership of their project and get the credit for it

46. Ethical relationships with colleagues • Effective and ethical relationships with colleagues will aid a student to make more rapid progress on their project

47. PUBLICATIONS • Are how the world sees you. • Determine whether you get funding for further research or not! • Determine whether you get promoted or not!! • Determine whether you keep your job or not!!!

48. THE NEGATIVE DATA PROBLEM

49. THE NEGATIVE DATA PROBLEM • Can negative results be important? • Are they publishable? • Would journals full of negative results sell? • If they are not published are they doomed to be repeated wastefully? • How can positive results be validated without knowing about negative ones?

50. Two types of authorship problem • Gift  Authorship • Inclusion of authors who did not contribute significantly to the study – this might include a PhD supervisor! • Hierarchy (Expectation / favour) • Colleagues ( Increase publications) • Ghost Authorship • Absence of Authors • Professional writers ( Should be acknowledged) • Hierarchical / political / personal reasons