ETHICS OF SOCIAL RESEARCH

Agreed by members of SSRU, 1997 Updated July 2000

Background

Thinking about ethics in research tends to raise hard questions rather than to provide easy answers. Funders, research journal editors and referees, writers of research guidelines [1] and people asked to consent to research are increasingly concerned about ethics in research, and these notes are intended to help researchers while they are considering the kinds of questions that might be raised.

It is often said that bad science is bad ethics'. Yet good science - good research design and practice - is not necessarily good ethics. Ethical research also takes account of the aims and effects of research, of the benefits it might bring and the harms it might inflict. Medical research has many guidelines and committees to help researchers to assess ethical aspects of their work, but social research has few such resources. Social research seldom raises serious physical risks, yet it can cause serious mental and social harm.

One purpose of ethical review is to assess the risks and the hoped-for benefits of the research; if the risks clearly exceed any likely benefits then the research is not justified. Yet the calculation is complicated. Researchers tend to overestimate possible benefits, and under-estimate risks. They may also compare the benefits which they hope their research will enable countless people to enjoy in future, against harm to a few they research. Yet their first duty is to those they research. During social research, any benefits to respondents are a bonus and cannot be assumed; the main people to benefit are the researchers who obtain the data.

Risks are hard to predict. Even if a project gains widely-shared approval, a few people may still be upset by it. The harms of coercion are difficult to measure. These may be felt so intensely by some people that they are unable to express their feelings, and researchers remain unaware of their distress. Researchers need to respond sensitively to anxiety, distress or reticence. The main value in discussing risk is to consider which risks might be prevented or reduced, how possible distress can be avoided, and how to respond to people who do become distressed.

Dilemmas for researchers trying to balance the interests of research and of future potential beneficiaries, with those of research participants, vary with each project. How can good practice  and valuable new ideas be developed without exploiting people while doing so? How far it is right to probe for answers from seemingly reluctant participants? How can researchers be rigorous but also respectful and sympathetic? How can we protect, especially minority groups from undue intrusion, yet involve them as fully as they wish, and ensure that they are not silenced or excluded from research which concerns them?

There are three main safeguards for research participants.

1. The researchers' concern to conduct ethical research.

2. A vital safeguard in medical research, but scarcely used in social research is peer review, such as by an ethics committee.

3. Respect for the consent or refusal of research participants. Informed and willing consent helps to ensure that people are not coerced or tricked into taking part in research; it is a means of setting a contract between researchers and participants. Yet a contract assumes a relationship between equal partners, and when researchers have much more relevant knowledge and often more power, the relationship is seldom equal, however much researchers inform and defer to their respondents.

Researchers should be aware  that Peer review group and ethics committees can themselves behave in unethical ways.

Many of the issues in research ethics are uncertain or contentious. They have therefore been phrased as questions to consider, rather than as standards to impose. Most of the points are summarised from published guidelines.

1.       The purpose of the research

          What is the research for?

• to learn more about people's views or experiences?

• to develop or evaluate a service or product?

• some other positive purpose?

Whose interests is the research designed to serve?

• If the research findings are meant to benefit certain groups, who are they and how might they benefit?

• What questions is the research intended to answer?

• Will the research be able to answer the research question, and is the design appropriate to the question?

• Why are the questions worth investigating and in whose view? Has earlier research answered these questions and, if so why are the questions being re-examined?

• How is the chosen method (such as a survey, interviews, observations, writing of essays or diaries, test papers, a controlled trial, focus groups) best suited to the research purpose?

• How is the research to be disseminated, has a publication/dissemination plan been considered?

2.       Costs and hoped-for benefits

• What contributions are participants asked to make to the research such as activities or responses to be tested, observed or recorded?

• Might there be risks or costs - time, inconvenience, embarrassment, intrusion of privacy, sense of failure or coercion, fear of admitting anxiety?

• Might there be benefits for people who take part in the research -satisfaction, increased confidence or knowledge, time to talk to an attentive listener?

• Are their risks and costs if the research is not carried out?

• How can the researchers promote possible benefits of their work, and prevent or reduce any risks?

• How do researchers plan to explain techniques such as an experimental design or randomisation which some people might find disconcerting?

• How will they respond to people who wish to refuse or withdraw, or who become distressed?

• Are the research methods being tested with a pilot group to check the personal effects on participants?

3.       Privacy and confidentiality

• How will the people's names be obtained, and will they be told about the source?

• Will they be able to opt in to the research (such as by returning a card if they wish to volunteer)? Opt out methods (such as asking people to 'phone to cancel a visit) can be intrusive.

• Is it reasonable to send reminders, or can this seem coercive?

• Will research directly with individuals be conducted in a quiet, private place?

• Can a friend or relative be present or absent as the participants prefers?

• In rare cases, if researchers think that they must report confidential replies, such as when they think someone is in danger, will they try to discuss this first with the participant?

• Do they warn all participants that this might happen?

• Will personal names be changed in records and in reports, and omitted on computer records, to hide the subjects' identity?

• What should researchers do if participants prefer to be named in reports?

• Have data protection laws been observed? Will the research records, notes, tapes, films or videos, be kept in lockable storage space?

• Who will have access to these records, and be able to identify the subjects - using post codes only does not protect anonymity.

• When significant extracts from interviews are quoted in reports, should researchers first check the quotation and commentary with the person concerned?

• What should researchers do if participants want the reports to be altered?

• Before researchers spend time alone with children, should their police records be checked?

• Should research records be destroyed when a project is completed, as market researchers are required to do?

• Is it acceptable to re-contact the same participants and ask them to take part in another project?

4.       Selection, inclusion and exclusion

• Why have the people concerned been selected to take part in the research?

• Do any of them belong to disadvantaged groups? If so, has allowance been made for any extra problems or anxieties they may have?

• Have some people been excluded because, for example, they have speech or learning difficulties?

• Can the exclusion be justified?

• If the research is about a certain social group, such as children or sick or disabled people, is it acceptable only to use the views of parents, carers or professionals working with them?

• Are the research findings intended to be representative or typical of a certain group? If so, have the participants been sufficiently well selected to support these claims?

• When a minimum number of participants is required, does the research design allow for refusals and withdrawals? If too many drop out, the research is wasted and unethical.

5.       Funding

• Is it unacceptable to raise funds from certain agencies and, if so, which ones should be avoided - tobacco, alcohol, baby milk, arms firms?

• Does the funding allow for time and resources to enable researchers - to liaise adequately with the subjects? to collect, collate and analyse the data efficiently and accurately?

• Are the subjects' expenses repaid?

• Should they be paid or given some reward after helping with research? Is it right to expect them to give their time and ideas for no reward, yet might payments affect their responses or become a form of over-inducement to join the project?

• Does the contract with funders cover potential problems of control over the process and reporting of the research?

6.       Review and revision of the research aims and methods

• Has anyone similar to the proposed participants helped to plan or comment on the research?

• Has a committee, a small group or an individual reviewed the protocol specifically for its ethical aspects?

• Is the design in any way unhelpful or unkind to the subjects themselves or the group they belong to?

• Is there scope for taking account of comments and improving the research design?

• Are the researchers accountable to anyone, to justify their work?

• What is the agreed method of dealing with complaints?

7.       Information for the participants

• Are the participants (and also parents or carers) given details about the purpose and nature of the research, the methods and timing, and the possible benefits, harms and outcomes?

• If the research is about testing two or more services or products are these explained as clearly and fully as possible?

• Are the research concepts, such as >consent' explained clearly?

• Are participants given a clearly-written sheet or leaflet to keep, in their first language?

• Does a researcher also explain the project and encourage them to ask questions, working with an interpreter if necessary?

• Does the leaflet give the names and address of the research team?

• How can people contact a researcher if they wish to comment, question or complain?

• If potential participants are not clearly informed, how is this justified?

8.       Consent

• Is it made clear to everyone that they can consent or refuse to take part in the research?

• Do they know that they can ask questions, perhaps talk to other people, and ask for time before they decide?

• Do they know that if they refuse or withdraw from the research this will not be held against them in any way?

• How do the researchers help potential participants to know these things, and not to feel under pressure to give consent?

• How do they respect people who are too shy or upset to express their views freely?

• In research with children, are parents or guardians asked to give consent? If children, or any other group thought not to be competent, are not asked for their consent, how is this justified?

• What should researchers do if someone is keen to volunteer but the parents or other gate-keepers refuse?

• Is the consent written, oral or implied? Consent forms can give people a formal time to state their own views. If consent is given informally how do researchers check that each person is informed and willing to take part?

• If consent is given informally, how do the researchers ensure that each participants views are expressed and respected?

9.       Dissemination

• Does the research design allow enough time to report and publicise the research?

• How do the researchers plan to show the balance and range of evidence?

• Will the participants be sent short reports of the main findings, or at least be asked if they would like to have a report?

• Will the research be reported in popular as well as academic and practitioner journals, so that the knowledge gained is shared more fairly through society?

• Can conferences or media reports also be arranged to increase public information, and so to encourage the public to believe that it is worthwhile to support research?

• Will the researchers discuss practical conclusions, and ideas on how to implement them, with practitioners?

10.    Impact of the research findings

• Besides the effects of the research on the individuals involved, how might the conclusions affect the larger groups they represent, such as single mothers, gay people, each ethnic minority, and so on?

• What models are assumed in the research? Are the group of participants seen as weak, vulnerable and dependant? As immature, irrational and unreliable? As capable of being mature moral agents? As consumers?

• How do these models affect the methods of collecting and analysing data?

• Is the research reflexive, in that researchers critically discuss their own prejudices?

• Do they try to draw conclusions from the evidence, not use the data to support their views?

• Do they aim to use positive images in reports, and avoid stigmatising, discriminatory terms?

• Do they try to listen to participants and to report them on their own terms as far as possible within the constraints of formal research?

• Do they try to balance impartial research with respect for the participants' worth and dignity

Ref:

1 A range of guidelines and reports on ethics is reviewed in Listening to children: children, ethics and social research by Priscilla Alderson, London: Barnardo's, 1995