Doing Better than the Media: Ethical issues in Trauma Research

Traumatic events are of considerable interest to the media. Not only are they interested in a story which will please their owners and editors, but the process itself is extraordinarily exciting. It takes them out of the mundane into the essence of survival and human drama. Researchers and therapists can also be attracted to events in a similar way. Even with the best intentions and motives it is hard to avoid the rush of being drawn into a victim's life when they are at their most vulnerable and needy. Our search for understanding through research also requires us to explore the experience of the event and its consequences. But what are the ethical issues of getting involved? Do we have any clear guidelines to follow in research and clinical practice? This paper addresses briefly the ethical issues in researching the effects of traumatic events.

Researchers and therapists can also be attracted to events in a similar way to the media. Even with the best intentions and motives it is hard to avoid the rush of being drawn into a victim's life when they are at their most vulnerable and needy. Our search for understanding through research also requires us to explore the experience of the event and its consequences. But what are the ethical issues of getting involved? Do we have any clear guidelines to follow in research and clinical practice?

This paper addresses briefly the ethical issues in researching effects of traumatic events. The title raises the possibility that traumatic effects may surface in the lives of the next generation. of researching such a phenomenon.

Trying to unearth effects of traumatic events over time is a complex and sensitive process and one not easily addressed even with carefully designed questionnaires and measures. This process can be exciting and finding such observations can be like discovering gold. The researcher can feel on the verge of an exciting find and become eager to delve more deeply. However this delving is intrusive. Awareness of this aspect of intervention should alert the researcher to all the possible roles he/she can play in the process. I would argue that ethics covers much more than a sensitivity to intruding on long-standing hurts.

What is a code of ethics? An ethical code is a system of moral principles or rules of conduct according to which an action can be judged right or wrong. - HONESTY AND INTEGRITY - A code of ethics is established on the presumption that agreement can be reached on the basis of an agreed set of standards of behaviour within a profession. Presumably these principles are framed according to underlying values of fairness, integrity and propriety. The context of research now is such that in a time of increasing competition for research funding and the products [e.g., a new technique that will eliminate human suffering] that might be generated by research there is pressure to 'produce' results that have outcomes. It is not surprising that most professional bodies and institutions have adopted a code of ethics.

How is this addressed in the trauma literature? In the trauma literature, however, ethical issues have not featured strongly in the past ten years. To my knowledge the International Society of Traumatic Stress Studies has not issued any guidelines for research into the effects from traumatic events, particularly. A review of the past seven years of Journal of Traumatic Stress and recent books such as the International Handbook on traumatic Stress Syndromes revealed no specific reference or edition devoted to ethical aspects of trauma research. Nor are ethical issues raised as a major focus in van der Kolk, McFarlane, and Weisaeth's (1996) recent text. In other areas of human research there is more interest and one is more likely to find reference to ethical guidelines in a text on qualitative research (e.g., Glesne & Peshkin, 1992 ). To comment on current understandings of ethical issues in disaster research is rather difficult and relies on more general material on ethics and research..

Issues of professional and technical propriety in eliciting traumatic memories, particularly in relation to retrospective reporting, are addressed in a special edition of the Journal of Traumatic Stress (October 1995) on research and traumatic memory (vol 8, 4 see review by Bonnie L Green) and these give some guidance for considering ethical practice, but the emphasis is on developing sound research protocols. The volume ends with a call to adhere to established principles of research in ensuring a more sophisticated understanding of traumatic memories which reflect on honesty and integrity in gathering information, analysing data, developing theory and reporting.

Eth (1992) raised three ethical issues and argues for moral sensitivity in the treatment of traumatised refugees. This is written in the context of providing assistance for refugees arriving in the United States. These issues are

- informed consent in engaging in treatment;
- conflicting values - recognition of differences between; and
- accepting inhumanity and avoidance of countertransference interference.

Ethical issues arise in the context of the seeking of 'truth' and the search for an expanded understanding of traumatic experience. As Bok (1996) pointed out scientists have always insisted on honesty in reporting results of inquiry. She agues that even in the most rigorous guidelines there is still the potential for exploitation of participating subject in experimental work such as drug trials. In trying to find the balance between the need to advance knowledge and the necessity of acknowledging right of subject she employs Iris Murdoch's argument that research is more than gathering data and forming conclusions - it is a process of ' truth-seeking, for imagining and questioning'. This applies not only to adopting rigorous methods of inquiry but also in the reporting of 'findings'. Findings are more than just information - they involve interpretation and some degree of creativity and relating to other research.

One of the elements is the insistence on informed consent has come about after abuses of the human rights of participants in research. The informed consent applies to:

- the decision to participate;
- a knowledge of the likely consequences of participation; and
- information given about the purposes of the research and the use that will be made of the "data".

In the case of effects of disaster exposure, the inquiry is problematic and the outcomes of say an interview may not be known until the interaction between interviewer and participant has begun. Probing/explorative interviews are an essential component of research into trauma effects. The researcher can not know in advance the course of the interview. It is also difficult to predict the effect of the inquiry on the participant.

To ensure some regard for standards in research these general safeguards are usually advocated by professional bodies and research institutions. These standards advocate at east the following:

1. Adherence to an articulated Code of ethics;
2. Informed consent to be used - his is much more than a signed statement to proceed. It is problematic eg, it is not maintaining anonymity, ( requires that a consent form be signed by the person and an independent witness ) what is a person consenting to? freedom to withdraw, agreement about published material; and
3. Developing an awareness of researcher dilemmas in human inquiry.

At all stages of inquiry ethical issues need to be considered and I pose a number of potential questions.

1. Inviting participation - How free are the respondents? Are they aware they are participating in research?
2. Informing and respecting the participant.
3. Contracting/negotiating the nature of inquiry - Does the participant have a contract of engagement?
4. Conducting the inquiry - is there sensitivity to the needs for safety and health?
5. Recording information - How secure is a permanent record?
6. Interpreting information - When is meaning emerging and being imposed?
7. Developing theory - Does ownership cease once the 'data' is moulded into theory?
8. The act and style of writing - does the participant have any influence on the slant of the presentation?
9. Publication and communicating findings - obligation is to community of scholars and the informants.

Tertiary institutions are getting increasingly fastidious about ensuring ethical practice ( eg person typing transcripts identified the interviewee and this led to litigation ). For example he University of South Australia has a clearly articulated policy on ethical practice in research:

The Australian National Health & Medical Research Council (NH&MRC) requires that a research proposal must satisfy the following:

1. The ethical issues raised by proposed methodology be addressed.
2. Means of obtaining informed consent and ensuring confidentiality are detailed.
3. Plans for storage of data are clear.

The NH&MRC (1994) warns of the benefits and disadvantages of unanticipated consequences:

A good interview encourages a reflective process where participants explore their feelings, thoughts and experiences. While this process of reflection often results in people learning new things about themselves, it may also reopen old wounds. Additionally, people often reveal things about themselves in an interview that they never had intended to talk about. Thus, interviews can become confessionals.

I believe that ethical guidelines need to go even further by examining:

- Frameworks of research - no research is value or context free.

- Awareness of the context of the researcher . Research is never value free. A researcher always operates within a social and professional framework. This social and professional framework can be very local or international. Outcomes of research can be influenced by the need to impress at the next conference; pressure for the funding or employing body to have impressive outcomes; the need to establish a professional standing that can make one economically viable; the physical surroundings of the contact; the theoretical framework of the researcher.

- Giving primary consideration to the participant.

- Ways of inquiring and ownership of knowledge.

- Use of other sources - Research into traumatic experience might also involve careful examination of other sources such as medical records, case notes, court transcripts, personal writings, other recordings ( eg TV footage ), - this raises the issue of whether a person needs to know of all observations are being used ( eg using information from the death notices in a newspaper ).

- Reporting - being explicit about audiences and professional standing.

- The danger of traumatisation or re-traumatisation during the process of research. This is an accepted principle in therapy but not always strictly adhered to in research.

- The problem of memory. Memory is a key construct in the examination of the effects of any trauma since it requires not only the careful re-telling by the traumatised person but also the reconstructing of experience over time . In a commentary on the special issue of the Journal of traumatic Stress on traumatic memory Jessica Wolfe (1995) pointed out that accessing autobiographical and personal memory is still subject to ' substantive (e.g., mediating events, time of exposure, age, difficulty in differentiating from generalised distress) and methodological issues (e.g, lack of standardisation, quantifying data, sampling). She argues that prospective studies (gaining access earlier and following the course of events) is necessary to address these methodological issues. A similar argument was proposed by Paton and Smith (1995). However these are not without difficulties and revisit the dilemmas of informed consent, intrusion, contamination, imposition of a frame of reference to name a few.

- Time and context. Transgenerational research has revealed several dilemmas exposed by the time lapse since the original trauma during. In this intervening period wartime experiences, the construction of family narratives, the many other contextual influences, situational imperatives and intervening events can interact with a specific experience, rendering the situation for the researher and therapist highly complex.

Some of the dilemmas I have faced in exploring second generation experience that affect recording, interpreting and reporting are.

- different versions from different family members
- -family secrets that are not known by all members
- the researcher intruding on personal space
- over interpretation from countertransference
- hearing the story they wanted you to hear
- hearing the story you wanted to hear
- general problems of memory
- respecting privacy and confidentiality
- respecting boundaries - beyond investigative journalism
- personal involvement - identifying with the participant and own experience
- " is that thing on ?" - when a family member wants to tells personal experience but does not want it recorded
- being faithful to the story - ( problems of recovered memory ) caught between two worlds of the informant and the professional audience.

In exploring the lives of those who may be experiencing hidden trauma I would argue that as researchers we need to be far more observant of ethical principles than other investigators such as journalists. We also need to be able to find a balance between respect for privacy and the safety of our participants and the need to advance knowledge. This sometimes might mean a trade-off and difficult decisions. Finding out where one stands in the absolutist - relativist continuum is a necessary part of entering the field.

So I would suggest some starting points for ethical inquiry maximising the security and emotional safety for participants and ensuring some degree of ownership. This may require rethinking the concept of informed consent by:

- entering into specific contract with the participants;
- specifying how you will conduct inquiry and consequences;
- agreeing on support mechanisms;
- stating what will happen to the information;
- stating the way the analysis will be done;
- obtaining specific permission to extrapolate and interpret;
- agreeing about other information that will be used for profiling;
- articulating the researcher's theoretical position; and
- agreeing on publication and writing.

For all that, as Bok (1996) argues there seems to be always trade-off between strict principle and the need to advance knowledge. An example close to home is the follow-up after a major traumatic event. [ eg the study of victims of the Florida hurricane; the instruments sent to practitioners after the Port Arthur ( no consent; no statement of use of material ) ]. On the other hand we need to go far beyond the rules of journalism and find a balance between our editorial and professional needs and the needs of our participants.

Eth, S. (1992) Ethical challenges in the treatment of traumatised Refugees. Journal of Traumatic Stres. January, 5, 1.

Glesne, C and Peshkin, A. (1992) Becoming qualitative researchers. Longman.

Green, B.L. (1995) Introduction to special issue on traumatic memory research. Journal of Traumatic Stress, 8, 501-504.

Harkness L, (1993) Transgenerational Transmission of War-Related Trauma, Chapter 53 in J Wilson and B Raphael (eds.) International Handbook of Traumatic Stress Syndromes, Plenum Press, New York and London.

McCann L. L. and Pearlman L. A.. (1990) Vicarious traumatisation: a framework for understanding the psychological affects of working with victims. Journal of Traumatic Stress. January, 3, 1.

Miller, T.W. and Velkamp L., (1993) Family Violence: Clinical Indicators among Military and Post-military Personnel, Military Medicine, December, 158, 766-771.

National Health and Medical Research Council Human research Ethics Committee. (1994 ) Ethical aspects of qualitative methods in health research (p 22). Canberra, ACT.

Paton, D and Smith, L.M. (1995) Methodological issues in the evaluation of work-related psychological trauma. Australian Psychologist, 30, 3, 200-209.

Raftery, J. and Schubert, S. (1995) A very changed man. University of South Australia. Adelaide.

University of South Australia. (1995) Ethics in Human Research. Guidelines and procedures. Adelaide South Australia.

van der Kolk, B., McFarlane, A.C. & Weisaeth, L.(eds) (1996) Traumatic stress: The effects of overwhelming experience on mind, body, and society. New York: Guilford Press.

Wolfe, J. (1995) Trauma, Traumatic memory, and research: Where do we go from here? Journal of Traumatic Stress, 8, 4, 717-726.

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