Core Issues

Introduction

“…whatever, in connection with my professional practice…I see or hear in the life of men, which ought not to be spoken of abroad, I will not divulge…”

The Hippocratic Oath

Everyone has the right to respect for his private and family life, his home and his correspondence. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society

Human Rights Act 1998 – Art 8 ECHR

The confidentiality of information supplied by research subjects and the anonymity of respondents must be respected.

ESRC REF, p.1

The right of the individual to privacy is a pre-eminent ethical driver in western societies. In the social researcher’s relationship to participants this translates into two imperatives: anonymity and confidentiality. Anonymity and confidentiality may be defined as follows:

  • Anonymity refers to concealing the identities of participants in all documents resulting from the research;
  • Confidentiality is concerned with who has the right of access to the data provided by the participants.

In practice the obligation of the researcher to the researched may be summarised thus:

  • Anonymity and privacy should be respected. This means that care should be taken in deciding whether or not sensitive information should be recorded;
  • Identities and research records should be kept confidential whether or not an explicit pledge has been given;

The right to remain anonymous should be respected unless a clear understanding to the contrary has been reached. Researchers have the responsibility to ensure appropriate precautions to protect the confidentiality of participants’ data. For instance, names and any information from which identities could be inferred (e.g. locations) should be removed.

Pragmatically speaking, it is likely that participants will be less willing to discuss sensitive issues if they think that identifiable information might be disseminated beyond the primary researcher.

Guaranteeing anonymity and confidentiality

Research participants should understand how far they will be afforded anonymity and confidentiality.

BSA ‘Statement of ethical practice’’
‘Relationships with research participants’ (1.b.ii.).

Undertaking good ethical research means that researchers have an obligation to spell out exactly what they mean by anonymity and confidentiality to research participants in advance of the research occurring. They should clarify the steps they will take to ensure protection of respondents’ identities and provide assurances concerning security measures for the storage of any data collected in the course of the research. Moreover, research participants should be made aware that they are entitled to reject particular forms of data-gathering (e.g., use of devices such as tape-recorders and video cameras).

Importance of giving realistic guarantees

Sociologists should be careful … not to give unrealistic guarantees of confidentiality

BSA ‘Statement of ethical practice’
‘Relationships with research participants’ (1.b. iv.).

“… participants should also be made aware that in certain situations anonymity cannot be achieved.

British Educational Research Association’s Ethical Guidelines
under the heading ‘Responsibility to the public’ (section 13)

It is important for participants to understand that it is not always possible to conceal identities completely, and that anonymity can sometimes be compromised unintentionally. For instance, there may be characteristics of a research situation, or of individual participants, that could make them easily identifiable and which cannot be disguised without distorting the research. Informed consent should be based on an appreciation of the practical limits of anonymity and confidentiality.

In some situations – for example, where researching with people engaged in criminal activities – it may not be possible to guarantee anonymity and confidentiality. In some situations, researchers may have a legal obligation or face legal pressure to reveal information about participants.

Confidentiality: Case Study Based On A Real-Life Recent Event

NOTE: The following case study was taken from an academic e-mail discussion listing in 2009. The text is a faithful representation of the e-mailing though all people and place names have been anonymised.

On November 17, 2009, X was jailed for contempt of court, since he refused to answer questions posed to him by a federal grand jury in (State in North America). They were interested in questioning him about his knowledge of an unsolved Animal Liberation Front action in 2004 at the University of Y. At the time, X was only 17 years old and was a resident of the [City in State]). Scott is a University of Y graduate student and Dakota language student whose research focuses on liberation struggles and social movements in the U.S. and globally.  In his work, he has researched and/or interviewed numerous activists from Native American struggles for sovereignty and land, and environmental and animal liberation movements in the U.S. The grand jury was interested in asking him to divulge the names of activists, which would violate the confidentiality agreements that he made with his research participants.

X took a principled stand against the grand jury's fishing expedition, and instead decided to go to jail rather than be party to what many attorneys and the American Bar Association (ABA) view as a dangerous practice that deprives people of basic constitutional freedoms. But it gets worse. Two days later (date) Scott was charged with conspiracy under the Animal Enterprise Terrorism Act (AETA) of 2006. This indictment came just one day before the 5-year statute of limitations was to expire.  Attorneys have speculated the indictment was rushed through to freeze the statute of limitations, with the intent of buying them time to issue a future indictment.  

X is currently out of jail, back in school, and awaiting trial. Those posting the e-mail listing were mounting a support campaign from the academic community and the general public to ensure X would have the resources necessary for a solid defence.

Regarding Scholarly Rights

The American Sociological Association's Code of Ethics states:

"Sociologists have an obligation to protect confidential information and not allow information gained in confidence from being used in ways that would unfairly compromise research participants, students, employees, clients, or others."

Section 11.01

"Sociologists do not disclose confidential, personally identifiable information concerning their research participants, other recipients of their service which is obtained during the course of their work."

Section 11.06

This scholar-research participant confidentiality is the bedrock of academic research and without it the public would lose trust in scholars seeking important information (concerning, for example, social histories or institutional discrimination practices), leading to the incalculable loss of invaluable data for community preservation, public policy, and university teaching purposes. X is being charged with conspiracy for invoking his constitutional rights and heeding to professional codes of conduct.

If a situation of this kind is at all foreseeable, the researcher has an ethical responsibility to warn participants of this possibility prior to their agreeing to participate. Clearly it is the case that some potential participants would be discouraged.

In regard to potential dangers arising from identification of participants, it should be noted that special considerations may apply when working with vulnerable groups (see Vulnerable Groups: Anonymity, Confidentiality and Protecting from Danger) and in innumerable situations where one is both an insider and outsider (See Research at the Global Crossroads: Anonymity and Confidentiality).

Staged consent

Many research activities take place in relatively predictable contexts such that realistic assurances can be provided at the outset with consent forms. In some cases, however, the unfolding of research activities may be inherently less predictable, such that it may be appropriate for assurances and agreements to be reviewed in the light of developing circumstances. It should be recognized that participants who are willing to be involved under one set of circumstances may not necessarily remain willing if those circumstances change.

In longitudinal research it is also important to recognise that the life-circumstances of a participant may change such that their continued participation may no longer be appropriate for them, or – as in the case of particularly frail of vulnerable individuals – their understanding of what they are consenting to may change. Special consideration that apply when working with vulnerable groups are discussed further in Vulnerable Groups: Anonymity, Confidentiality and Protecting from Danger.

It may, for instance, be appropriate to invite participants to review their involvement on the basis of transcripts of their input.

Data Security

Social researchers should be careful that information about their participants does not become available to audiences other than those to which the participants themselves have agreed. Ensuring protection of confidential information requires that appropriate data security procedures and precautions be adopted. In particular, researchers should have regard to their obligations under the Data Protection Act 1998, which requires that information be:

  • processed fairly and lawfully
  • obtained and processed for a specified purpose
  • adequate, relevant and not excessive for the purpose
  • accurate
  • not kept longer than necessary
  • processed in accordance with the rights of data subjects, e.g. right to be informed about how data will be used, stored, processed, transferred, destroyed…
  • kept secure
  • not transferred abroad without adequate protection

Please see the Data Protection Act tab for more information and discussion of applying the above criteria.

In some circumstances participants may prefer to be identified. This could be because:

  • it would be more distressing to be anonymous in publication, as illustrated in the example below; or
  • participants wish to give maximum credibility to the researcher’s findings for political impact (see the Media and Publication main section of this website)

Example: Whilst anonymity is frequently assumed to be of paramount importance, a recent research project with parents of young adults with cancer suggests that the issue is more complex than is commonly assumed:

Confidentiality: Case Study Based On A Real-Life Recent Event

Using narrative data written by parents in response to a call for contributions, the research study sought to understand the effects on families when young adults were diagnosed with cancer. The parents, who had been brave enough to send the narratives, had shared some of the most intensely painful and intimate details of their family’s lives. This led the researchers to question whether, in publication, some respondents might prefer to be referred to by their own names. What would be the effect of seeing themselves and their lost son or daughter referred to by another’s name in any publication using extracts from their narratives? The researchers contacted all participants to address this issue. Two thirds of the respondents replied that they would like their own names to be used and those of their son or daughter, partners and wider family. Despite attempts to satisfy the wishes of respondents, it became apparent to the researchers that at least one respondent had made a mistake in requesting the use of pseudonyms. After the publication of a journal article, she contacted the researchers to say that despite requesting the use of pseudonyms, when seeing her words attributed to another name, and reference to her dead son under another name, she felt that she had made a grave error.

(Contributed by Anne Grinyer)

Anonymity, confidentiality and the greater good

Whilst respecting anonymity and confidentiality are core principles of social research they are not absolutes. There may be situations when the researcher has a duty of care to reveal information that has been provided in confidence, or which the researcher has discovered through interactions with the participant. For example, if a researcher were to become aware of abuse in a care home, it would be necessary to act on this knowledge and inform the relevant authority. Who constitutes the relevant authority in any given case would depend on a variety of factors, including whether the abuse is isolated or systemic within the organisation. In any case, researchers would be well advised to consult confidentially with their own colleagues and inform their own institution.

NHS Act 2006 – exceptions to confidentiality of medical data

The Ethics and Confidentiality Committee (ECC) has been established to undertake the responsibilities of the National Information Governance Board for Health and Social Care (NIGB) under section 251 of the NHS Act 2006 1 and to consider and advise on ethical issues relating to the processing of health or social care information as referred to it by the NIGB.

Section 251 of the NHS Act 2006 (originally enacted under Section 60 of the Health and Social Care Act 2001), allows the common law duty of confidentiality to be set aside in specific circumstances where anonymised information is not sufficient and where patient consent is not practicable. [emphasis added]

Applications for approval to use Section 251 support were previously considered by the Patient Information Advisory Group (PIAG) but will now be considered by the ECC.

The members of PIAG were invited to become members of the ECC in order to retain their expertise and to provide continuity during the transition from the PIAG to the NIGB.

The Ethics and Confidentiality Committee
http://www.nigb.nhs.uk/ecc

 

1. http://www.opsi.gov.uk/acts/acts2006/ukpga_20060041_en_19#pt13-pb4-l1g251

 

 

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