Annotated bibliography on informed consent



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ANNOTATED BIBLIOGRAPHY ON INFORMED CONSENT
Rose Wiles, Vikki Charles, Sue Heath & Graham Crow

University of Southampton
This annotated bibliography comprises papers and books relating to informed consent in social research particularly, but not exclusively, in relation to research with groups commonly characterised as ‘vulnerable’ (children and young people, people with mental health problems or learning disability, older people and people receiving palliative care). This bibliography is by no means exhaustive, but comprises papers published between 1998-2004 identified through searches on various electronic databases (BIDS, Ingenta Select, Web of Science, EBSCO, Science Direct). It also includes some books published prior to this where these are viewed as having made an important contribution to issues and debates around informed consent. The bibliography is not exhaustive but does comprise what we have identified as some of the central papers or books on the topic. Books and papers are grouped under the following headings: general ethics literature; general literature on informed consent; medical research ethics and consent; children and young people; mental health and learning disability; palliative care; older people; e-research; research in developing countries.
General Ethics Literature
Most books on research methods discuss research ethics to some degree – these are not identified here. Those identified here are books/papers which are specifically about research ethics, generally relating to philosophical positions or specific ethical issues rather than consent. These form the background to issues of consent.

Beauchamp T. & Childress, J. (2001) Principles of Biomedical Ethics, 5th Edition. Oxford University Press, Oxford.

This is the handbook of medical ethics which provides the basis for discussions about research ethics more broadly especially in relation to medical and health-related research.

Baez, B. (2002) Confidentiality in qualitative research: reflections on secrets, power and agency. Qualitative Research 2(1): 35-58.

This paper explores the ways in which notions of confidentiality in qualitative research, in terms of notions of harm and privacy, hinder transformative political action. General literature on confidentiality is reviewed and the author also draws on research conducted among a minority group to illustrate the ways in which issues of confidentiality limit the ways that data can be reported. The article suggests that in order for qualitative research to be transformative, the convention of confidentiality must be questioned.

Butler, I. (2002) A code of ethics for social work and social care research. British Journal of Social Work 32: 239-248.

This paper outlines the purpose, foundation and principles on which a code of ethics for social work research should be based. A code for social work research is outlined but this is presented as a prompt to further discussion rather than as a developed and accepted code. It is not intended as a prescriptive code but rather as a series of ethical considerations against which a particular piece of work can be reviewed.

Grinyer, A (2002) The anonymity of research participants: assumptions, ethics and practicalities, Social Research Update, Issue 36, Department of Sociology, University of Surrey

Researchers usually assume that anonymity of research participants is desirable. However, the automatic use of pseudonyms is not without problems (eg pseudonyms are not always 'equivalent', or may hold negative associations for participants). This paper describes research involving parents of young cancer sufferers. Only a minority of parents wanted to use pseudonyms, with the majority choosing not to out of respect for their child's memory. The paper describes the process of negotiation and some of the practical dilemmas that were involved.

Grinyer, A. (2001) Ethical dilemmas in nonclinical health research from a UK perspective. Nursing Ethics 8,2: 123-132

This paper explores the ethical dilemmas for social researchers working in the area of health. It addresses ethical dilemmas in relation to confidentiality, commitment to the welfare of participants and the tensions that arise from undertaking research for an employer. In relation to informed consent, issues relating to observation that may take place prior to study commencement or employees using privileged access to situations but not obtaining consent for them are discussed.

Haimes, E. (2002) What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics 16,2: 89-113.

This paper focuses on the study of ethics rather than issues relating to research ethics or informed consent more specifically. The paper outlines the relevance of the social sciences to the study of ethics. It identifies the various strands in the social science work on ethics, both theoretical and empirical and how this body of work contributes to the study of ethics. Taken together these two strands of work are seen as providing knowledge on the social processes that lie behind the designation of certain areas of social life as being ‘to do with’ ethics. It argues for a stronger role for the social sciences in debates about ethics and for ethics to be a subject of sociological enquiry.

Hannigan, B. & Allen D. (2003) A tale of two studies: research governance issues arising from two ethnographic investigations into the organisation of health and social care. International journal of nursing studies 40: 685-695

This paper focuses on issues of the ethical regulation of research in health and social care. It draws on the authors’ experience of seeking research ethics approval for two investigations with the same research design and addresses four issues: consistency within and between ethics committees; the assessment of vulnerable individuals regarding their suitability to participate in studies; the relationship between ethics and access; and, ethics committees’ understanding of qualitative research.

Herdman, E. (2000) Reflections on “making somebody angry”. Qualitative Health Research 10,5: 671-702.

This paper focuses on the methodological and ethical issues associated with critical research. Its focus is on a critical ethnographic study focusing on the problems of providing non-discriminatory health care to people with HIV/AIDS. It discusses the criticisms and debates that followed the publication of the final report. These centred around: objections by the ethics committee to discussions in the final report regarding the limitations imposed by the committee regarding access to participants; reactions by some medical professionals to adverse findings; the response of the media who sensationalised and distorted the findings. The authors discuss the challenge of engaging in critical research in medical settings without compromising future research.

Homan, R. (1991) The Ethics of Social Research Longman: London.

This book explores various issues relating to ethics in social research with a chapter focusing specifically on informed consent. This chapter charts the history and principles of informed consent and some of the ways in which informed consent, as it is commonly perceived, is problematic. It outlines the arguments that are used to justify the importance of informed consent (such as ‘rights’, ‘respect’ and the protection of researchers). It also outlines the ways in which researchers use notions of informed consent to achieve their own ends in research (e.g., persuading people to participate, cultivating rapport and avoiding full explanations of the research). The role of gatekeepers and the use of consent in relation to secondary analysis are also explored.

Homan, R. (1992) The ethics of open methods. British Journal of Sociology 43: 321-332.

This paper criticises the practice of informed consent in ‘open methods’ (i.e., interviewing and survey research) as set out in the various professional association guidelines. Homan argues that these guidelines encourage researchers to abide by specific procedures which protect the interests of the researcher and not the participant. He argues that researchers treat negotiations with research participants as situations of conflict which they manage in ways that meet their own ends by virtue of their superior negotiating skills. So, for example, he argues that researchers use various means to persuade people to participate (such as minimising the information they provide and offering material or other rewards) and to ensure that the data they get meets their needs (such as by employing tact and friendliness to encourage disclosure). He argues that many researchers use informed consent as a means of satisfying themselves that they are behaving ethically and relieving them of their moral responsibility. He notes that what sociologists need are formulations which emphasise moral precepts in place of procedures.

Lowman, J. & Palys T. (2001) Limited confidentiality, academic freedom, and matters of conscience: where does CPA stand. Canadian Journal of Criminology October 2001: 497-508

This paper clarifies the position of the Canadian Psychological Society’s (CPA) on confidentiality and addresses the issue of limited confidentiality in relation to research on prisoners where researchers are presented with information indicating that the research participant may pose a serious threat to him/herself or others.

Miller, T. & Bell, L. (2002) Consenting to what? Issues of access, gate-keeping and ‘informed’ consent. In Mauthner, M., Birch, M., Jessop, J. & Miller, T. (2002) Ethics in Qualitative Research London: Sage.

This chapter examines ethical issues that arise in the course of accessing study participants drawing on examples from three studies. The authors argue that consent should be ongoing and renegotiated throughout the research process. The role of gate-keepers and the distinction between access and consent is explored. They note that researchers should continually reflect on their routes of access to address complex issues around consent .

Neutal, C. (2001) The concept of autonomy in a pluralist society. Pharmacoepidemiology and Drug Safety. 10: 463-466.

This paper discusses limitations in the application of the principle of autonomy (one of the principles to be used as guidelines to ethical decisions identified by Childress & Beauchamp). Autonomy is defined as the ability to make ones own decisions and to be able to do so without experiencing any pressure which would unduly influence a decision.

Palys T. & Lowman, J. (2001) Social research with eyes wide shut: the limited confidentiality dilemma Canadian Journal of Criminology 255-267

This commentary explores the issue of ‘limited confidentiality’ commonly used in research whereby participants are warned that there may be limits to confidentiality if issues relating to harm to themselves or others are identified during the course of the research. The paper focuses on this issue in relation to research on prisoners. It explores: a) the impact of limited confidentiality on the validity of the research and b) on what and to whom researchers have ‘obligations’ to disclose this information. In exploring this latter point, legal, ethical and institutional obligations are discussed.

Plummer, K. (2001) Documents of Life 2. Sage, London. (pp226-227)

Discusses different ethical positions in social research - ethical absolutist (risks should be outweighed by benefits, often enshrined in codes) and situational relativist (ethical decisions have to be produced from the situation at hand, no guidelines).

Ramcharan, P & Cutcliffe, J (2001) Judging the ethics of qualitative research: considering the 'ethics as process' model, Health and Social Care in the Community, 9, 6, 358-366

The premise of this paper is that qualitative research designs are treated disadvantageously by ethics committees. This unfairness arises from the divergent discourses which underpin social research on the one hand and health/medical research on the other. The paper explores the assertion that 'a poorly designed study is by definition unethical' through considering some counter-assertions: 'not every well-designed project is, by being well-designed, ethical' and 'not all research which starts with an unclear design is, by virtue of having an initially unclear design, unethical'. The paper argues for a model of ethics as process, and the need for ethics committees to be responsive to issues of emergent design rather than a one-off review.

Richards, H. & Schwartz, L. (2002) Ethics of qualitative research: are there special issues for health services research? Family Practice 19 (2): 135-139.

This paper highlights the main ethical issues in qualitative health services research and provides guidance. It discusses risks to participants and means of reducing risks. The issue of treating consent as a process is explored. The authors explore some of the practical and ethical drawbacks to process consent but advocate its use in qualitative health services research.
Richardson, J. & Godfrey, B. (2003) Towards ethical practice in the use of archived transcripted interviews International Journal of Social Research Methodology 6,4: 347-355.
This paper explores the ethical issues raised through the use of archived interview transcripts. These issues are identified as concerning relationships with research participants, informed consent and confidentiality. The authors argue that existing ethical guidelines do not refer to secondary analysis and notes that social scientists and historians need to develop and negotiate a shared ethical practice. Some suggested approaches are made.

Seymour, J. & Skilbeck, J. (2002) Ethical considerations in researching user views European Journal of Cancer Care 11: 215-219.

Paper outlines the background of research ethics and ethical principles. Identifies 3 different moral positions (from Foster 2001) and notes that each fundamentally affects how researching user views is conducted and understood. These are goal-based morality (focus on outcome of research), duty-based morality (focus on process of research and duty of care to participants), rights based morality (collaborative and emancipatory forms of research).

Small, R. (2001) Codes are not enough: what philosophy can contribute to the ethics of educational research. Journal of Philosophy of Education 35 (3): 387-406.

This paper explores the background to the development of research ethics, the philosophical approaches to ethics and the arguments around the different approaches. It argues that formal codes of ethics are not the best way of addressing ethical issues. Drawing on Homan (1992), it argues that codes and ethics committees take over the moral responsibility that each researcher should have for their behaviour and are a danger. He argues for the importance of developing individuals' capacity to make ethical decisions about the design and conduct of their research - the importance of extending existing abilities not setting up formal codes and checklists.

Stark, C. (1998) Ethics in the research context: misinterpretations and misplaced misgivings Canadian Psychology 39(2): 202-211.

This paper explores the use of guidelines in relation to research in psychology. Drawing on the Canadian Code of Ethics for Psychologists, it notes that there is confusion regarding how the standards stated in research ethics guidelines can be operationalised. Research is viewed as a social endeavour in which researchers and participants are embedded in a number of social contexts and the paper discusses the ways in which these need to be considered in ensuring respect for the dignity and welfare of others in research. Issues relating to consent are explored in some depth. These include: the use of deception; the implicit use of coercion; participants’ right to withdraw from research; issues of information and informed choice; and, issues relating to language and comprehensibility. The relevance of the Guidelines to other social sciences is explored.

Thompson, P. (2003) Towards ethical practice in the use of archived transcripted interviews: a response International Journal of Social Research Methodology 6,4: 357-360.


This paper is a response to Richardson and Godfrey’s paper (International Journal of Social Research Methodology, 2003, 6,4: 357-360). The paper outlines the legal context relating to copyright, confidentiality and data protection. It explores the ethical issues raised by secondary analysis of archived material and the ways these are managed by data archives, such as Qualidata.

Truman, C. (2003) Ethics and the ruling relations of research production Sociological Research Online 8(1)



http://www/socresonline.org.uk/8/1/Truman.html

This paper explores the growing role that ethics committees have in the research process and contrasts the concerns raised by the ethics committee in relation to a specific research project to those of the research participants. The paper draws on the author’s experience of gaining ethical approval for a research study focusing on user participation in a community mental health service. The concerns raised by the ethics committee are discussed; one of these concerns related to consent and the ways that this issue has been dealt with in other social research as well as in this particular study are explored. The views of research participants of various aspects of the research, including the process of consent, are explored.

Williamson, G. & Prosser, S. (2002) Action research: politics, ethics and participation. Journal of Advanced Nursing 40(5): 587-593.

This paper explores the political and ethical aspects of action research. Central to the ethical problems faced by researchers in action research are issues of informed consent. The authors explore the difficulties of guaranteeing confidentiality and anonymity and in ensuring meaningful informed consent in action research because of the close collaboration between researcher and participant and because of the evolving nature of the research which makes it unclear precisely to what the participant may be consenting. They recommend that researchers and participants recognise, discuss and negotiate these problematic areas before studies commence.

Williamson, E., Kent, J., Goodenough, T. & Ashcroft R. (2002) Social Science gets the ethics treatment. Sociological Research Online 7,4

http://www.socresonline.org.uk/7/4/williamson.html

This paper examines the current provision for ethical review within the social sciences and considers how existing structures could be improved to protect research participants in accordance with international guidelines and regulation. The paper reviews the current regulation of social science in the form of professional guidelines, peer review, funding application procedures and steering groups and compares these processes with the independent ethical review currently required for health research. The authors note that the UK social science community rely on a process of professional self-regulation and that researchers fear that more bureaucracy may impede the research process. However, they argue that more formal regulation, in the form of ethical review, has some positive aspects to it, for example, in ensuring that research and methodological problems are highlighted at the outset and making the process of research more transparent . They argue that social science researchers need to become involved in devising and contributing to systems of ethical review.



General Literature on informed Consent
Listed here are books/papers with a general focus on consent in social research.
Alderson, P. & Goodey, C. (1998) Theories of consent. British Medical Journal 317: 1313-1315.

This paper explores the ways that different disciplines and professions in health care or health research understand consent and the various theoretical models of consent. The paper reviews theories of real consent, constructed consent, functionalist and critical consent and postmodern choice. The paper aims to demonstrate how an analysis of theories can clarify practical knowledge about the advantages and problems in obtaining consent which will assist everyday practice and research.

Alderson, P. (2000) Ethics Review of Social Research: ten topics for social researchers to consider. Education-line database.

www.leeds.ac.uk/educol/documents/00001481.htm

This paper raises questions, summarised from published guidelines, of the ethical issues that social researchers need to consider in research design. Questions for consideration by researchers under the headings of consent, information for participants, confidentiality and dissemination are explored.

Coomber, R. (2002) ‘Signing your life away?: why Research Ethics Committees (REC) shouldn’t always require written confirmation that participants in research have been informed of the aims of a study and their rights – the case of criminal populations (Commentary). Sociological Research Online 7,1.

http://www.socresonline.org.uk/7/1/comber.html

This commentary discusses the extension of Research Ethics Committees into social research and notes the difficulties this presents. The issue of informed consent is explored in relation to groups who wish, or need for reasons of safety, to remain anonymous. It identifies the restrictions that RECs place on social researchers and research participants in relation to this and notes that these may expose both parties to risk. It calls for researchers to shape emerging RECs in UK institutions in ways that protect research, researchers and research participants. The discussion relates particularly to criminology.

Cutliffe, J. & Ramcharan, P. (2002) Levelling the playing field? Exploring the merits of the ethics-as-process approach for judging qualitative research proposals. Qualitative Health Research 12,7: 1000-1010.

This paper discusses the relevance of process consent (or on-going consent throughout a research study) in qualitative research. The issues and techniques of this approach are discussed along with examples of studies where it has been used. The paper argues that ethics-as-process are an appropriate way for Research Ethics Committees to assess the ethics of qualitative research.

Fluehr-Lobban, C. (2000) How Anthropology should respond to an ethical crisis. The Chronicle of Higher Education

http://chronicle.com.free/v47/i06/06b02401.htm

This commentary outlines some of the unethical practices adopted by anthropologists and how the issue of informed consent has impacted on anthropologists.

Herrera, C.D (1999) Two arguments for 'covert methods' in social research, British Journal of Sociology, 5, 2, 331-343

This paper explores two common defences for the use of covert methods in social research: (i) that it is sometimes in the interests of the greater good for 'research subjects' not to know that they are being researched; and (ii) that covertness is pervasive and unavoidable in everyday life, such that covert research is merely a natural extension of this and that 'tacit consent' can be picked up from research subjects. Herrera rejects both of these defences. The first defence is linked to a wrong-headed perception of protection and risk, which misconstrues the protective nature of informed consent procedures and ignores the risks associated with disclosure post-research. The second defence is linked to a questionable assumption that the activity of being researched is unexceptional and that individuals would not therefore object to discovering that they had been indeed involved in research.

Johnson, B. & Macleod Clarke, J. (2003) Collecting sensitive data: the impact on researchers. Qualitative Health Research 13,3: 421-434.

This paper reports on a study undertaken to explore researchers’ perceptions of the impact that conducting research on sensitive topics has on them. Researchers were found to experience a number of difficulties including lack of training, confidentiality, role conflict, desire for reciprocity and feelings of isolation. Issues relating to the management of consent and researchers’ reactions to these are explored.

Kent, G. (1996) Shared understandings for informed consent: the relevance of psychological research on the provision of information. Social Science and Medicine 43, 10: 1517-1523.

This paper examines the contribution that psychologists can make to an understanding of the process of informed consent in research. The authors note that that there are important individual differences in relation to the amount of information required, appropriate language and design of information sheets and consent forms.

Kimmel, A. (1988) Ethics and Values in Applied Social Research London: Sage.

This book reviews ethical issues in social research. Chapter 4 deals specifically with the issue of informed consent and outlines the issues relating to information provision, assessing the adequacy of informed consent and the impact of informed consent on research practice.

Lee-Treweek, G. & Linkogle, S. (Eds.) (2000) Danger in the Field London, Routledge.

This book explores different forms of danger (physical, emotional, ethical and professional) in various qualitative research settings. The ethical issues raised in the various chapters, many of which relate to informed consent in various ways, are outlined in the introduction which discusses informed consent and covert research. This covers many of the issues outlined in Punch (1986).

Mauthner, M., Birch, M., Jessop, J. & Miller, T. (Eds.) (2002) Ethics in Qualitative Research London: Sage.

This book examines the theoretical and practical aspects of ethical dilemmas in qualitative research. Chapter 3 deals specifically with access, gatekeeping and informed consent.

Mulhall, A.(2003) In the field: notes on observation in qualitative research. Journal of Advanced Nursing 41 (3): 306-313.

This paper explores some of the difficulties associated with unstructured observational work in terms of access and field notes. The focus is nursing research. The ethical issues raised by observational studies in relation to consent are discussed. The following issues are explored: how informed can participants be?; how can consent be obtained from everyone who enters the field?; and, how extensive can consent to observation be assumed to be?

Oliver, P. (2003) The Student’s Guide to Research Ethics Maidenhead, Berkshire, Open University Press.

This book examines the ethical issues which occur in research. Chapter 2 explores issues relating to consent including providing information, written consent, assessing benefit and harm, researching ‘vulnerable’ groups, gatekeepers and ethics committees.

Punch, M. (1986) The Politics and Ethics of Fieldwork. Sage, California, USA.

This important and very useful book discusses the moral and political issues that occur in fieldwork, particularly relating to participant observation research carried out within the disciplines of sociology and anthropology. It discusses the following questions by exploring issues of consent, deception, privacy, identification, confidentiality, causing harm, spoiling the field:



  • Are there areas of social life that should not be researched?

  • What dilemmas are raised by research with 'deviant' groups?

  • Is fieldwork inevitably deceitful?

  • Can the academic profession successfully control research through regulation?

Issues of consent are explicitly examined and the ethical arguments informed consent presents for participant observation research are explored. It is argued that a strict adherence to informed consent is not always workable or desirable and that deception is sometimes justifiable provided the interests of the research participants are protected.

Smythe, W E & Murray, M J (2000) Owning the story: ethical considerations in narrative research, Ethics and Behaviour, 10, 4, 311-336

This paper makes the claim that conventional criteria for ethical practice in social research - based on 'the data source model' - are not appropriate to narrative research. The authors reject the relevance of conventional notions of informed consent, on the grounds that it is not possible within narrative research to predict in advance what might happen, whilst the legalistic overtones of informed consent procedures are inappropriate to the method. The authors argue instead for a form of process consent. They conclude that the key ethical concerns of narrative researchers revolve around epistemological (rather than ethical) questions of narrative ownership and the multiplicity of narrative meanings, and outline some recommendations for practice arising from these considerations.

Wendler, D (2000) Informed consent, exploitation and whether it is possible to conduct human subjects research without either one, Bioethics, 14, 4, 310-339

This paper explores the dilemma of how to treat individuals in medical/health research who are unable to give consent. Key issues include: (i) the 'necessity' argument, ie if a researcher does not need to recruit those unable to give consent then they should be left out (although this could be seen as a form of discrimination if they might benefit from involvement); (ii) the giving of proxy consent and the need to take into account a subject's previous values and preferences; (iii) the 'subject's condition' requirement, ie that individuals should only be included if the research is associated with their condition; and (iv) the 'therapeutic misconception', ie the possibility that an individual might fail to distinguish between research participation and clinical care.


Wilkinson, T. (2001) Research, informed consent and the limits of disclosure. Bioethics 15(4): 341-363

This paper explores what information potential research participants should be given about the research and the researcher in the interests of good ‘informed consent’. The author argues that participants should be given more information than that required by ethical guidelines and that unless participants are informed about researchers’ personal characteristics and views and the sponsorship of the study, their autonomy is being overridden. However, overriding participants’ autonomy is sometimes required to ensure the researcher’s privacy. The paper resolves the conflict between informed consent and the interests of researchers by recommending that: (i) study participants generally should be told of the personal characteristics of researchers when this is relevant to the research; (ii) that participants should be told of researchers’ views when conceptually connected to the research; and, (iii) that participants should almost always be told about sponsorship.


Medical Research Ethics and Consent
This section comprises books/papers relating to consent to medical research or treatment. Some of the issues raised in this literature have relevance for consent in social research.

Casarett, D. (2001) Beyond informed consent: the ethical design of pain research. Pain Medicine 2 (2): 138-146.

This paper explores the concept of informed consent as a mechanism for protecting research participants. It argues that it provides only limited protection and that a better mechanism is to ensure a study design is consistent with patients’ preferences and goals. The paper suggests some ways that pain researchers can design research that is consistent with participants’ (patients’) preferences. These include: assessing the potential benefits for individuals and the wider group; the risks and burdens of participation and the voluntariness of participation. The focus is primarily clinical research.

Coleman, M., Evans, B. & Barrett G. (2003) Confidentiality and the public interest in medical research – will we ever get it right? Clinical Medicine 3,3: 219-228.

This paper reviews legislation and professional guidance to doctors regarding confidentiality and medical research in the UK and notes the considerable confusion around this issue. The issue of consent and confidentiality is explored. The paper calls for a balance between an individual’s right to privacy and responsibility to society. While the focus is on medical research the debates are of relevance to social research.

Corrigan, O. (2003) Empty ethics: the problem with informed consent. Sociology of Health and Illness 25,3: 768-792.

This paper explores informed consent in relation to participation in clinical drug trials. It examines participants’ experiences of the process of consent and argues that decisions about consent are made in contexts where prevailing discourses and norms shape freedom and choice. The author argues that informed choices based on an adequate understanding of information and on careful consideration of the risks and benefits are difficult to achieve in practice because a number of factors impede this in the medical context. These include: the type of illness a patient is suffering from; their anxiety about its trajectory; their expectations for treatment; and their general trust in the doctor and medical science.

Edwards, S., Lilford, R., Thornton, J. & Hewison, J. (1998) Informed consent for clinical trials: in search of the ‘best’ method. Social Science and Medicine 47,11: 1825-1840.

This paper comprises a systematic literature review of different methods of obtaining informed consent for clinical trials. The review suggests there may be an optimal amount of information that enhances patients’ understanding and reduces anxiety. The impact of different methods of consent on participation is also explored. The paper relates to clinical research but the issues are relevant to debates in social research.

Freimuth, V., Crouse Quinn, S., Thomas, S., Cole, G., Zook, E. & Duncan T. (2001) African Americans’ views on research and the Tuskegee Syphilis Study. Social Science and Medicine 52: 797-808.

This paper explores the low participation of African Americans in research. Through a focus group study it explores knowledge of, and attitudes to, medical research. Attitudes to informed consent are explored.

Gammelgaard, A., Rossel, P., Mortensen, O. (2004) Patients' perceptions of informed consent in acute myocardial infarction research: a Danish study. Social Science and Medicine 58 (11): 2313-2324.

This paper reports the findings of a qualitative study of patients with acute myocardial infarction who were invited to participate in a large multi-centre trial in Denmark. The paper explores the extent to which patients found the informed consent process acceptable as well as how various factors influenced their experience of the consent process. The study found that individuals who consent under these circumstances tend not to be well informed although it is unclear whether this is due to patients' lack of competence or poorly delivered information. Suggestions for future trials are made.

Hansson, M.O. (1998) Balancing the quality of consent. Journal of Medical Ethics 24: 182-187.

This paper focuses on the issue of informed consent in medical treatment and research. It argues that informed consent is applied too rigidly and that the type of consent sought should be balanced against variables such as degree of confidentiality and the context. Three levels of consent are suggested.

Schuklenk, U. (2000) Protecting the vulnerable: testing times for clinical research ethics Social Science and Medicine 51:6: 969-977.

This paper describes a number of historical breaches of research ethics. Such breaches have typically involved people from vulnerable populations. The frameworks within which decisions on research ethics in medical research are based are discussed in detail and provide a useful discussion of the main philosophical approaches to research ethics. Current debates concerning the use of vulnerable people in research are explored in relation to research in developing countries and the use of prisoners and psychiatric patients as research ‘subjects’. An outline of the work of Research Ethics Committees is provided. While the focus in this paper is on medical research, some of the issues discussed have relevance for research conducted in health care settings and for social research more generally.

Willison, D., Keshavjee, K., Nair, K., Goldsmith, C. & Holbrook, A. (2003) Patients’ consent preferences for research uses of information in electronic medical records: interview and survey data. British Medial Journal 326: 373.

This paper describes a study comprising a survey and interviews conducted in Ontario, Canada to assess patients’ preferred method of consent for the use of information from electronic medical records for research. People appear willing to allow information from medical records to be used for research but most prefer to be asked for consent either verbally or in writing. Most patients prefer a time limit for their consent.

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