- Omur Elcioglu PhD,
Osmangazi University, Faculty of Medicine, Department of Medical Ethics and History of Medicine, Eskisehir, TURKEY
- Oztan Oncel PhD,
Istanbul University, Faculty of Medicine, Department of Medical Ethics and History of Medicine, Istanbul, TURKEY
- Ilhami Unluoglu MD.,
Osmangazi University, Faculty of Medicine, Department of Family Physician, Eskisehir, TURKEY
Corresponding Author: Omur ELCIOGLU
Email: Email: firstname.lastname@example.org
Eubios Journal of Asian and International Bioethics 14 (2004), 50-52.
Domestic violence is a multi-faceted problem and its victims are women from all social classes and positions. Studies involving domestic violence have been carried out by investigators in various disciplines, including medicine, psychology and social science. In this paper we discuss the ethical responsibilities of investigators who are concerned with the health aspects of domestic violence.
The physical safety of respondents and interviewer from potential retaliatory violence by the abuser is of prime importance. At the same time the women, as the subject and beneficiary of the research, need to give full informed consent and ensure that the interview process is affirming and does not cause distress. It is important that research findings are fed into ongoing advocacy policy making and intervention activities.
Physicians have a crucial role in health care system's response to domestic violence. It is not the physicians' responsibility to solve the problem of domestic violence. It is all of our responsibility. Whatever the form of a study there are certain basic ethical principles (respect for people, non- maleficence, beneficence and justice) that investigators should follow.
Key words: Domestic Violence, Investigators, Ethical responsibility
Domestic violence is a complex problem. Studies involving domestic violence have been carried out by investigators in various disciplines, including medicine, psychology and social sciences. Some studies are concerned with records of prior events and their assessment in retrospect. Some studies involve face-to-face interviews with actual victims, using a prepared set of questions. Whatever the form of study, there are certain basic ethical principles that investigators should follow.
In 1991, the Council for International Organizations of Medical Sciences (CIOMS)developed a set of International Guidelines for the ethical review of Epidemiological studies. These guidelines out line the basic ethical principles of epidemiological research involving people: Respect for individuals, non- maleficence (minimising harm), beneficence (maximising benefit) and justice (Ellsberg &Heise, 2002:1599-1604).
Family violence has a ripple effect. Those who experience it and those who wittness it suffer physical and emotional injuries. Those who perpetrate it also wound themselves. Violence damages family and other relationship, often permanently.
Clinicians often struggle when trying to address domestic violence. They may not know what to say or do. They may nor find it traumatic to listen to a patient reports. Some have trouble empathizing with the victim's helplessness (Lamberg, 2000:554-556).
It is noteworthy that there have been many works on direct violence, pointing out the seriousness of the situation many women find themselves in around the world (Katherine & Little,2000:135-141; Minow, 1999:1927-1929; Eyler & Cohen, 1999:2569-2576). In this paper we discuss ethical responsibilities of investigators who are concerned with the health aspects of domestic violence.
Ethical Concerns in Research on Violence Against Women
WHO have published guidelines for addressing Ethical and Safety Recommendations for Research on Domestic Violence Against Women (WHO,1999). Research on violence against women, however, raises important ethical and methodological challenges. Researching abuse is not like other areas of investigation -The nature of the topic means that issues of safety, confidentiality and interviewer skills and training are even more important than in many other forms of research. It is not an exaggeration to say that the physical safety and mental wellbeing of both the respondents and the research team can be put in jeopardy if adequate precautions are not taken.
In order to guide future research in this area, WHO has developed the following recommendations regarding the ethical conduct of domestic violence research that build on the collective experience of the International Researchers Network on Violence Against Women (IRNAW).
Potential to inadvertently cause distress
The main ethical concern related to researching violence against women is the potential to inadvertently cause distress (Ellsberg & Heise, 2002:1599-1604). New and rapid developments in science and technology create new ethical problems. When scientific studies are carried out on human beings, scientific ethics may clash with medical ethics. The attitude and the conduct of a scientist towards fellow scientists and towards individuals involved in his/her study constitute the subject of the scientific ethics ( zgr,1995:53-58). Scientific ethics are clearly of wider scope than medical ethics, since in addition to diagnostic and therapeutic trials, some scientific studies attempt to perform experiments on human beings. These experiments are valuable for discovering the causes of domestic violence and for developing public policy to prevent it. During an experiment, extremely confidential information may be collected about participants. The use and dissemination of this information requires special sensitivity to the circumstances of the victims.
Minimising risk to respondents
The WHO guidelines provide recommendation for minimising risk to respondents. It is well-known that female victims may feel deeply ashamed, experience extreme generalized fear, and be filled with anxiety that they will be victimized again. Some victims sufficiently overcome their fears to volunteer for medical and scientific investigations. Even when they are paid for their participation, their coming forward is basically an altruistic act to help others. The first ethical responsibility of investigators (Aydőn;2001) is therefore the protection of these volunteers.
Location and Time of Investigations
A medical or scientific study generally has a specific goal to attain. The choice of a goal is normally determined by the resources available to investigators. The study may target an institution or a particular geographic area. These targets may be chosen because of the prevalence of the problem in the institution or among inhabitants of the area, or the target may be chosen simply because of the expectation that the execution of the study will be easy. In any case, in planning the study, investigators must devote a portion of their resources to taking care of the special needs of participants of the study (Tezcan,1992;Aksakogu,2001).
In domestic violence studies, investigators should be particularly sensitive to the freedom of movement of women. The location of the study should be chosen so that there exists an extensive and accessible public transportation system for participants of the study to come to interviews with investigators. Women must be free to choose interview times, and this fact must be impressed upon them at the very outset. Transportation costs may put an unnecessary burden on women and therefore should be paid from the funds available for the study. If travel times are long and interviews come close to meal times, women should also be paid for meals. These compensations should be offered and methods of payment clearly explained during the initial contact with participants of the study.
The principle of respect for individuals incorporates two fundamental ethical principles: respect for autonomy and protection of vulnerable people. Because of the special nature of domestic violence, investigators must avoid causing feelings of inferiority, shame, or coercion in participants. Information provided by the participant must be voluntary. The questions of an investigator must be well-prepared. As much as possible the investigator should avoid open-ended questions that may push the participant into awkward silence. In the preparation of questions, the investigator can use for guidance many published reports of domestic violence studies.
Participants' Understanding Of The Study
Kant's second categorical imperative (Singer,1994;Oguz,1998) states "So treat humanity whether in their own person or that of another always as an end, never means only." This is the foundational principle of medical ethics. When a victim of a domestic violence comes to a medical facility, she expects that the doctor and his/her staff will use all the skills and tools they have to treat her wounds, to reduce her pain, and to restore her health. She is an "end" for the doctor and his/her staff. When the same victim volunteers for a scientific/medical study, her situation changes. The study aims at goals that are independent of her person. She becomes a "means." This may have unintended consequences, both psychologically and physically. Her health and well-being may become endangered. This is morally unacceptable whatever the benefits of the study (Jonsen,1989:205-208; WHO,1999). Indeed, the ethical rule has been clearly stated in the Helsinki Declaration of the Association of World Physicians: health and well-being of patients must have priority over any scientific result or benefit.
One way to avoid or reduce such unintended consequences is to promote the subject's understanding of the study. This amounts to removing the psychological screen that one normally erects between a professional and a layman. She should be informed about the goal and the methods of the study in detail. The investigator should discuss the nature of questionnaires she will be expected to fill out and explain to her how they relate to the scientific/ medical aim of the study. This (Gerbert et al, 2000: 329-331) should not be done in an authoritarian or intellectually overwhelming fashion but in a manner that puts her psychologically on par with the investigator. She must feel free to discuss with the investigator any concerns she might have. She must also feel free to withdraw from the study at any time if she thinks her interest is not being well-served. It is the ethical responsibility of the investigator to be attentive to the mood of the volunteer and solicitous of reasons behind the mood (WHO,1999).
The basic tools in domestic violence studies are registration forms, questionnaires, and polling forms. These tools must be thoroughly tested during their preparation on control groups to make sure that they do not negatively provoke the moral sensibilities of participants. Investigators should not forget that they are seeking and collecting information about events that are unpleasant, about acts that are legally and socially unacceptable, and about situations that are humiliating to the participants of the studies. Questions intended to elicit confessions are not the best method to gather accurate information. In an interrogative atmosphere, a participant may refuse to answer questions or give less than truthful answers. This would defeat the purpose of a scientific study. A better strategy is to prepare multiple scenarios and ask questions about these scenarios. A participant is then put into the position of an impartial observer offering honest opinions about hypothetical situations. If it is needed, the participant's own personal history can be constructed from these comments WHO,1999).
It can happen that a participant volunteers sensitive information. It is then best that investigators confine themselves to factual questions, such as when the event took place, how it started, etc. Elicited facts should be carefully recorded in as much detail as is offered by the participant. This factual orientation should generally be adopted in investigators' use of language. Investigators (Malterud,1998:195-198) should avoid using emotionally charged words or phrases, in particular the word "violence", in the presence of the participant.
Because of the special nature of domestic violence, security arrangements must be considered among the tools of a scientific study. In individual domestic violence cases, the potential exists for explosive events, which can endanger not only participants but also investigators themselves. Sufficient precautions and continuous security measures must be taken to prevent such events. Experience indicates that, as a security precaution, it is best to interview a female victim alone without any other member of her household, if she lives in the household in which the violence occurred (Collier, 1994:485; WHO,1999).
Personnel and Training
For a scientific study, one generally gathers personnel according to their technical abilities and trains them thoroughly in goals and procedures. Investigators are then expected to observe whatever they are supposed to observe in an alert but intellectually and emotionally detached manner. This is not sufficient in domestic violence studies. An investigator for such a study cannot be as detached and non-interfering as, for example, a biologist is when the latter observes the daily struggle for survival among animal species. First, there are legal requirements and moral obligations when one witnesses or learns about actual crimes. The personnel of a study are citizens of a country and members of a community. They cannot abdicate their legal duties or tarnish their personal dignity and reputation for the sake of a study. Second, domestic violence events can be dramatic and sensational and are, therefore, daily bread and butter for newspapers and television programs. A negligent and callous misstep can result in publicity that could greatly damage the reputation of the scientific community. Third, no matter how neutral and abstract the scientific aims of a domestic violence study are, the study's ultimate goal is to modify certain social and cultural practices. Those who have a stake in the perpetration of these practices will view the study as a political attack on themselves and will counter-attack. Their targets are likely to be the characters and reputations of the investigators.
Clearly, the personnel in a domestic violence study ought to be dedicated men and women who, either naturally or by training, have special sensitivity to human beings. The personnel must include people trained and available to offer first aid if a participant of the study needs emergency medical treatment. The personnel must include people trained to handle extreme agitation so that they can provide comfort to a participant going through an emotional tempest. Investigators must be informed about the local health care system and have pre-arrangements with professionals in it who will take care of the medical and emotional emergency needs of a victim. They must also be trained about police and court procedures and have pre-arranged access to legal professionals so that they can guide a participant through various bureaucracies. Finally, the personnel must be thoroughly informed about governmental and non-governmental organizations that provide aid, shelter, and child-care to victims of domestic violence (WHO,1999; Ferris et al.,1997:851-857).
Use and Confidentiality Of Data
The information collected during a study belongs to both investigators and participants. How it will be used must therefore be settled at the beginning of the study by mutual consent. A consent form for the use of data, photographs, and other images must be prepared and signed by a participant at the initial interview. This consent form must be sufficiently detailed so that future disputes may be avoided if a particular participant withdraws from the study and requests the suppression of the relevant data.
It is the ethical responsibility of investigators to preserve the confidentiality of the data collected during a study. Confidentiality is required both because of patients' rights and for scientific reasons. At the outset of the study, a small group of investigators must be designated as the principals who will have access to the raw data. Computer files that contain raw data, and rooms and cabinets that contain documents must be secured (Thurstan et al..,1999:127-131). Participants' actual names should never be used on questionnaires, polling forms, or on various reports. Instead, codes must be developed to identify individuals and events. Only coded and processed information should be made available to investigators outside the small designated group.
As the discussed in this paper, the challenges facing domestic violence researchers and advocates can be viewed in the context of 3 important trends. First, the extraordinary rate of change in social, political, and scientific understanding of domestic violence during the past decade means that the definition of the problem-and definition of success- is continually changing. Second, each component of an interdisciplinary approach- domestic violence as a health problem, a legal problem, and a social change problem-contributes relatively unique definitions and measures of what it means to be successful. Third, in each arena-health, justice, and social change- researchers and practitioners are separated by wide gaps in experience, professional authority and goals. Interdisciplinary methods can narrow these gaps, reminding us that outcome measures in domestic violence need to address the status of health, justice and human rights in our communities (Flitcraft,1997:1400-1401).
We must remember that women living with violence are already at risk. Researchers cannot eliminate this reality, just as they cannot fully eliminate the possibility that further harm will be caused by their study. They do, however, have an obligation to carefully weigh the risk and benefits of any study, and to take every precaution possible to restrict possible harm and maximise possible benefits (Ellsberg &Heis,2002:1599-1604).
Universal screening, identifying risk factors,validating patients, and documenting abuse will help prevent further abuse. We are all responsible for solving the problem of domestic violence .
Aksakoglu,G (2001), Sa_lőkta Ara_tőrma Teknikleri ve Analiz Yntemleri.(Research Techniques and Analysis Methods). Dokuz Eyll niversitesiYayőnlarő .Izmir.(in Turkish).
Aydőn,E (2001), Tőp Eti_ine Giri_ (Introduction to medical ethics)Pegem Yayőnevi Ankara(in Turkish).
Collier,J(1994), Patient rights,The Lancet 343: 485.
Ellsberg, M and Haise,L(2000), Bearing Witness:Ethics in domestic violence research,LanceT,Vol 359:1599-1604:
Eyler,E.,Cohen,M.(1999),Case studies in partner violence Am Fam Physician 60: 2569-2576.
Ferris,E.l.,Norton,P.G.;et al(1997),Guidelines for managing domestic abuse when male and famele partners are patient of the same physician JAMA 278(10): 851-857.
Flitcraft,A(1997), Learning from paradoxes of domestic violenceJAMA 227(17) 1400-1401.
Gerbert,B.,Moe,J.,Carpers,N,et al. (2000), Simplifying physicians' response to domestic violence West J Med 173:329-331.
Jonsen,A.R .(1989),The ethics of using human voluteers for high risk research,The Journal of Infectious Disease 160(2):205-208.
Katherina,J.,Little,M.D.(2000),Screening domestic violence idetifying, assisting and empowering adult victims of abuse, Postgrad Med 108(2):135-141.
Lamberg L(2000), Domestic violence : What to ask,What to do JAMA Vol 284.No 5:554-556.
Malterud,K. (1999), Understanding women in pain .New patways suggested by Umea researchers:Qualitative research and feminist perspectives Scand J Prim Health Care16 (4):195-198.
Minow,M.(1999),Violence against women - A challenge to supreme court, NEJM 341(25):1927-1929.
Oguz,Y.(1998),Klinik ara_tőrmalarda etik sorunlar.(Moral problems in clinical
Research)Klinik psikiyatri 2:67-72.(in Turkish).
zgr,S.(1995).Bilim eti_i (Morals of science) Trkiye Klinikleri Tőbbi etik 3(2-3) 53-58 (in Turkish).
Singer,P.(1994), Ethics Oxford University Press,New York.
Tezcan,S.(1992), Epidemiyoloji.Tőbbi Ara_tőrmalarőn Yntem Bilimi (Epidemiology. Analysis Metdods of Medical Research)Hacettepe Halk sa_lő_ő Yayőnlarő Ankara (in Turkish).
Thurstan,W.E.,Burgess,M.M.,Adair,C.(1999),Commentary ethical issues in use of computerized database for epidemiologic and other health research,Cronic Dis Can, 20(3):127-131.
WHO (1999).Putting women's safety first. Ethical and safety recommendations for research on domestic violence against women.WHO/ EIP/GPE/99.2.