Research Ethics

1. Research Ethics Dr Natasha Whiteman Department of Media and Communication University of Leicester new9@le.ac.uk

2. Today • Why do we care about research ethics? • Key ethical principles in research • Unsettling ethical “rules” • Implications of ethics for your own work.

3. What do we mean by research ethics? • Ethics – ethical principles as applied to the activity of research • Risk – i.e. risks of research activity – to safeguard the safety of yourself and others • Legal frameworks and codes of practice • Relevant to ALL researchers – across the sciences, social sciences and humanities.

4. Why behave ethically? • As researchers we have a responsibility to behave ethically (to be fair… to not cause harm to others.. etc) • To protect the rights of individuals, communities and environments involved in research • To assure favourable climate of public trust for continued research • To meet public demands for accountability and legal codes of responsible behaviour

5. Ethics in a changing academic context… • Contemporary codes of research ethics emerge from ethical frameworks developed to protect human subjects in biomedical research. • Increasing bureaucratisation and institutionalisation of research ethics in the social sciences • Move away from the expert authority of individual researcher • Introduction of ethics committees in UK higher education institutions, similar to Institutional Review Boards in the US • Increasing surveillance of research activity

6. “perverse consequences” of ethical regulation (Dingwall, 2008, 5)

7. What this means for you… “All student research is required to gain ethical approval before starting. Ethics review is required to ensure that the research conforms to the ethical standards expected by the Institute. It is also used to assist supervisors and students when reflecting upon ethical research practice.  When student research involves particularly complicated or sensitive ethical issues, it can be referred by the reviewers to the IOE REC.” http://www.ucl.ac.uk/srs/research-ethics-committee/pages/ioe

8. Ethics and the Process of Research Data analysis Sampling Research question Dissemination Data collection Literature reviewing Data Management Writing

9. To whom are we ethically responsible as researchers? • Our participants • Our sponsors • The University • The general public • Ourselves

10. ETHICAL PRINCIPLES IN SOCIAL SCIENCE RESEARCH

11. Key terminology relating to research ethics Human Subject Respect Informed consent Right to Withdraw Privacy: Confidentiality and Anonymity Disclosure Vulnerability

12. “Human participants”

13. “The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved, as to enable him to make an understanding and enlightened decision. This latter element requires that, before the acceptance of an affirmative decision by the experimental subject, there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person, which may possibly come from his participation in the experiment. • The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.” (1947 Nuremberg Code.)

14. What is a “human subject”?What is the difference between a “subject” and an “object”?

15. “Human Subjects” • “a living individual about whom an investigator conducting research obtains • data through intervention or interaction with the individual, or • Identifiableprivate information” (US Department of Health and Human services) • “‘Human participants’ (or subjects) are defined as including living human beings, human beings who have recently died (cadavers, human remains and body parts), embryos and foetuses, human tissue and bodily fluids, and human data and records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and test results including scholastic achievements). (ESRC, 2005, 7)

16. Informed Consent “Informed consent” refers to the idea that research participants should always be provided with enough information to make an informed decision about whether or not they want to take part in your study. Consent to take part in a research project should be voluntary, informed and obtained without duress

17. Voluntary Informed Consent The Right to Withdraw Participants have the right to withdraw from the project including after the data has been collected They should be informed of this right Any attempt to convince a participant not to withdraw should be carefully considered to ensure that no coercion or duress is being used The possibility of a withdrawal after data collection should be considered in the planning stage to ensure that such an occurrence would not have a serious detrimental effect on the project

18. Informed consent guidance It is expected that informed consent will be gained from all participants in research. The IOE REC will request to see information sheets and consent forms when you submit your application. If you do not intend to use these documents then this will need to be addressed in your ethics application. http://www.ucl.ac.uk/srs/research-ethics-committee/pages/ioe

21. Voluntary Informed Consent Questions to consider: Is the participant competent to make their own decision regarding participation? Are the participants free to choose to participate or not to participate? Have the participants sufficient information to make this decision? Do the participants fully understand this information?

22. Working with Children Legal aspects: Children defined as anyone under 18 years of age One key ethical question: From Whom do we obtain consent? Child consent? Parental consent? Gatekeeper consent?

23. Consent from Children • “In line with article 12 of the United Nations Convention on the Rights of the Child, which requires that children who are capable of forming their own views should be granted the right to express them freely in all matters affecting them, commensurate with their age and maturity, it is expected that efforts should be made to obtain informed consent from children involved in any research” “Research Concerning Children and Young People,” http://www2.le.ac.uk/institution/committees/research-ethics/research-concerning-children-and-young-people-guidelines

24. When Might Informed Consent Not Be Appropriate? Observation in public places Research necessitating deception Covert research Using data in the public domain

25. Rights, Interests, Dignity and Safety of Participants and Related Persons Participants’ rights need to be considered throughout the research – not just at the beginning. This includes the dissemination stage, when you are writing up your research. Participants should be protected from undue risk Participants should be protected from physical and psychological harm

26. Confidentiality and Anonymity Confidentiality exists when only the researchers are aware of the participants’ identities and have promised not to reveal those identities to anyone else Anonymity means that there is no way individual participants can be identified from any of the data or information collected from them in the research

27. Confidentiality and Anonymity Questions to think about: What procedures or practical steps are you taking to ensure the both anonymity and confidentiality are preserved? Will data be stored electronically in coded form or with participant names attached? Will hard copies of questionnaires be retained with respondents’ names – if so how securely will they be stored? Who will have access to the data?

28. Data Protection Act (1998) Relates to the processing of personal data (information) about individuals Collecting data – only collect data that there is a legitimate research reason for collecting – “fair and for a specified purpose” Handling data - Process and store data about individuals only with their consent “Informed”consent – why collecting data? for what purpose? how will it be stored? who will have access? will it be published? Disclosure - Do not disclose personal data about identified individuals to other people without their permission Personal data on individuals should not be stored or archived any longer than is necessary for legitimate research reasons

29. Disclosure On occasions a researcher may unexpectedly observe illegal behaviour or behaviour that is likely to be harmful to the participants or others In these cases, the researcher must consider carefully whether to disclose this information to the appropriate authorities In so far as possible, researchers should inform participants and/or their guardians of their intention to disclose and the reasons for this

30. ETHICAL CODES OF PRACTICE

31. Ethical codes and guidelines Answering ethical questions can be difficult There are not always ‘right’ answers Responses depend on individuals Need to weigh the benefits of our research against negative costs to individual participants Action is also shaped by professional guidelines on ethical research practice – concerning privacy, confidentiality and anonymity Individual principles and rules do not provide the answer but can provide a framework for thinking about ethical dilemmas and defending decisions

32. “Commitment to a Code of Ethics will ensure that all research is conducted according to the following concerns: • To respect the autonomy of individuals • To avoid causing harm • To treat people fairly • To act with integrity • To use resources as beneficially as possible” http://www.ioe.ac.uk/about/documents/About_Policies/Researchethics.pdf

33. Ethics guidelines • British Sociological Association “Statement of Ethical Practice” (2002) • British Educational Research Association “Ethical guidelines for educational research” (2004) • What similarities/differences can you identify between these two codes of practice?

34. Internet research

35. The Internet and Ethical Uncertainty To what extent are ethical principles established in the study of offline environments relevant to the study of online sites? What is the role/responsibility of researchers in these new environments What is the status of data sourced from these settings? Legal/institutional responses.

36. The “Internet” is not one thing • Recognition of the diverse nature of online environments • Variance between environments in respect of: • public/privateness • modes of communication • visibility of participation • durability of content • sensitivity of topic/content • expectations of use/audience • Complexity of individual environments

37. Example: Facebook • Potentially sensitive content • Houses personal information • Connection between online profiles and offline subjects • Complex status in terms of public/private distinction • “semi-public” environment: involves membership and requires registration but open to all (Elm 2009) • Access to profiles tailored through privacy settings • Users’ confusion about privacy settings and anticipated audience • Other parties observing/using content (journalists, law enforcement) • Issues relating to the ownership of content • Users grant the site “an irrevocable, perpetual, non-exclusive, transferable, fully paid, worldwide license to use” their personal information. • Environment in process: eg Introduction of “news feed” (2006)

39. Consent should be sought from participants before involving them in research • Obtaining informed consent from participants within online environments may prove disruptive to the researched community. • From whom should we seek consent? • Owners? Moderators? Individual members? • Does our research involve “human subjects”? • “Representations or People?” (White, 2002) • Textual approaches to online activity. • Challenging the “dominance of a spatial paradigm” for understanding the internet (Basset and O’Riordan, 2002, 236).

40. Do we need to obtain consent?? • Facebook profiles. • “tweets” • Postings to a publicly accessible forums • Medical support groups? • Football fan sites? • YouTube videos, featuring under-18s who are identified in the films, and are shown to be promoting illegal activity.

41. Permission should be sought to enter closed spaces for the purpose of research • What counts as a “closed” space online? • Not an either/or issue • Degrees or “layers” of publicness (boyd) • Distinction between “technical” and “perceived” markers of privacy • Technical = focus on access (Passwords? Invitations to enter? Gatekeepers?) • Perceived = focus on expectations of participants

42. Anonymising research subjects is important to protect privacy • Attributing authorship may be as important as protecting privacy • Naming/crediting sources common within humanities research • Evidence that some online participants would expect to be credited if their posts are used.

43. What is our role as researchers? • To protect and/or to educate? • Entering into complex environments • Who else is observing these settings? • Marketing, journalists, law enforcement, bots etc.. • Should researchers support misguided expectations of the privacy/publicness of online environments?

44. Implications for your work

45. What ethical issues might arise in your research? • Informed consent • Research relationships • Power dynamics in relationship between researcher and researched • Insider research (including conflict of interest/values) • Research topic/population • Sensitive topics • Vulnerable groups • Research Methods • Negotiating access (gatekeepers) • Covert observation/deception • Intrusive interventions • Risk of harm to participants (including stress, anxiety or humiliation) • Data collection, archiving and management • Confidentiality and data protection • Records of personal or confidential nature. • Dissemination and Publishing

46. To Finish…

47. Things to consider before and during research Your own motivations Eg how could your links to sponsors, personal convictions or career aspirations produce conflicts of interest? Consent Do you have informed consent? Necessary elements: information; understanding; voluntariness; competence of potential participants; actual consent. Confidentiality Who has access to your data? How will it be stored? What will happen after research is completed? How are you going to inform your informants of confidentiality

48. Things to consider before and during research Harm Could your research cause physical, psychological, cultural, financial, legal or environmental damage? How easily can participants withdraw from the research after it begins? Have similar studies been done before? Dissemination and feedback Are results available and comprehensible to participants? Could they be misinterpreted or misused? Who ‘owns’ the results? You? Your sponsor? Cultural awareness Have you considered the personality, rights, beliefs and ethical views of your researched individuals/communities? Would you wish to be treated as you are treating your research participants?

49. Dr Natasha Whiteman new9@le.ac.uk