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UNICEF PROCEDURE FOR ETHICAL STANDARDS IN RESEARCH,
EVALUATION, DATA COLLECTION AND ANALYSIS
Document Number: CF/PD/DRP/2015- Effective Date: 01 April 2015 Issued by: Director, Division of Data, Research and Policy (DRP)
I. Rationale
To underpin its programmes, policy and advocacy work, UNICEF invests substantially in conducting, as well as commissioning, research, evaluation and data collection and analysis in order to create a strong evidence base to support the realization of the rights of every child, especially the most disadvantaged.
In light of UNICEF’s strategic agenda to harness innovation and deepen and widen the evidence base to drive and sustain global progress towards the realization of children’s rights, ensuring ethical conduct in evidence generation is imperative. This is necessary both in its own right and as a significant contributor to ensuring quality and accountability in the evidence generation process, especially when it involves children.
Ethical reflection and conduct in evidence generation is requisite in an equity based framework. A focus on the most marginalized, and frequently, the most vulnerable population groups necessitates measures to ensure that participants are respected and that they are protected throughout the process. Further, efforts must be taken not only to mitigate against risks to participants, but also to staff and to the organization as a whole.^1
In order to ensure the protection of, and respect for, human and child rights within all research, evaluation
and data collection processes undertaken or commissioned by UNICEF, this procedure is designed to achieve the following objectives:
To establish minimum and binding standards for ethical research, evaluation and data collection and analysis processes in UNICEF globally; and To ensure effective processes and accountability for ethical oversight of these processes.
This procedure is complemented by, and builds on, the pre-existing Strategic Guidance Note on Institutionalizing Ethical Practice for UNICEF Research^2 and the Evaluation Technical Note No. 1, Children Participating in Research, Monitoring and Evaluation (M&E) — Ethics and Your Responsibilities as a Manager , UNICEF Evaluation Office, 2002.
(^1) While this procedure applies to research, evaluation and data collection and relevant analysis, ethical considerations and principles can and should be considered within UNICEF’s broader programmatic and advocacy work as reflected and articulated in the Human Rights Based Approach to Programming and the broader agenda for human rights mainstreaming. (^2) Recommended and shared by Deputy Executive Director - Programmes on 30/10/ 2013. This guidance document outlines considerations relating to ethical research involving children.
II. Applicability / Scope
i. All UNICEF research, evaluation and data collection and analysis^3 involving human subjects or the analysis of sensitive secondary data as outlined in Figure 1.
ii. All research, evaluation or data collection processes (identified in para i. above) that are carried out, or commissioned by UNICEF sections – including Country Offices (COs), Regional Offices (ROs), and Headquarters sections (HQ)^4 – both in partnership and independently.^5 Where a UNICEF partner has its own mechanisms for ethical review, they may substitute for this procedure but only in the instances where partner ethical review processes meet the minimum standards laid out in this procedure.
iii. This procedure will be reviewed within two years.
III. Audience
All UNICEF staff involved in the development and implementation of research, evaluations or data collection and analysis processes, most notably project managers for evidence generation projects, country focal points for particular data collection projects, as well as Country Representatives, Regional Directors and Heads of Divisions who will be responsible for ensuring and maintaining the highest ethical standards in all the evidence generation endeavours of UNICEF units, offices and divisions.
IV. Definitions
Assent – Assent is the willingness to participate in research, evaluations or data collection by persons who are by legal definition too young to give informed consent according to prevailing local law but who are old enough to understand the proposed research in general, its expected risks and possible benefits, and the activities expected of them as subjects. Assent is similar to the process of informed consent. Assent by itself however, is not sufficient, however. If assent is given, informed consent must still be obtained from the subject's parents or guardian or a responsible adult.
Confidentiality – Confidentiality is the process of protecting an individual’s privacy. It pertains to the treatment of information that an individual has disclosed in a relationship of trust, with the expectation that this information will not be divulged to others without permission.
(^3) This includes studies. (^4) National Committees are also encouraged to apply the standards in this Procedure to the research they carry out or commission through partners. (^5) Includes research carried out by partners using UNICEF support.
to limit access by others to aspects of their person that can include their thoughts and identifying information.
Primary data – The creation of new data via first-hand collection.
Proposal – For the purposes of this procedure a proposal is a detailed overview of a planned research, evaluation or data collection and analysis project. Therefore, within this procedure, a protocol for research or data collection, or an inception report for an evaluation, would be considered a proposal.
Research^9 – T he systematic process of the collection and analysis of data and information, in order to generate new knowledge, to answer a specific question or to test a hypothesis. Its methodology must be sufficiently documented to permit assessment and replication. Research at UNICEF should examine relevant issues and yield evidence for better programme and policy advice.
Secondary d ata – Information gathered from pre-existing sources or databases.
V. The Principles Guiding this Procedure
The minimum standards and procedures outlined in this document are guided by the following three principles as laid out in the Belmont Report on Ethical Principles and Guidelines for the Protection of Human Subjects of Research (1979). It should be noted that while these principles apply to all participants involved, children may be particularly vulnerable in the evidence generation process and appropriate considerations as elaborated in the Strategic Guidance Note on Institutionalizing Ethical Practice for UNICEF Research and the Evaluation Technical Note No. 1, Children Participating in Research, Monitoring and Evaluation (M&E) — Ethics and Your Responsibilities as a Manager can and should be reflected in the process. The following are the three principles that should inform ethical evidence generation:
1. Respect : All evidence generating activities should ensure respect for all persons. Respect demands that individuals be treated as autonomous agents. An autonomous agent is an individual capable of deliberation about personal goals and of acting under the direction of such deliberation. To respect autonomy is to give weight to autonomous persons' values, preferences, and beliefs and to recognise their capability for self-legislation, their ability to make judgments, to state their opinions and to make choices.
In respecting an individual’s autonomy, recognition is required that personal agency may be limited due to age, circumstance or personal capacities. In this context, respect for autonomy requires recognition of capabilities, power differentials and the degree of agency that an individual may have. In the context of children and other vulnerable groups respectful evidence generation needs to be situated in their lived experience with recognizing the reality of unequal relationships of power that frequently exist, creating environments that support these individual’s personal agency and dignity.
(^9) UNICEF (2014) Taxonomy for Research, Evaluation and Studies, https://unicef.sharepoint.com/teams/OoR/SitePages/Research%20Taxonomy.aspx
2. Beneficence and Non-maleficence Beneficence - The principle of beneficence refers to the requirement that actions within evidence generating activities promote the well-being of individuals, communities or society as a whole. The principle of beneficence requires the identification of clear benefits likely to arise from evidence and to reconsider proceeding if these cannot be articulated. Beneficence includes the concept of reciprocity, whereby the evidence generated is conveyed back to the participants so that they may triangulate findings, contextualize their participation and potentially gain from the knowledge disseminated.
Non-maleficence - The principle of non-maleficence, doing no harm, requires avoiding harm or injury to participants, both through acts of commission or omission. While the primary purpose of research, evaluation and data collection and analysis is to generate new evidence, this goal should never take precedence over the rights of individual participants. Non-maleficence requires an examination of the profile, competencies and skills of researchers and enumerators to ensure no harm comes to participants by virtue of inappropriate, unskilled or incompetent researchers or enumerators. It also requires explicit consideration of means to ensure the privacy of participants, their safety and any possible negative impacts arising from participation.
3. Justice: The principle of justice requires that consideration is given to who benefits and who bares the burden of the evidence generation. This requires that due reflection is given to determining the appropriateness of proposed methods of selecting participants. Selection should not result in unjust distributions of the burdens and benefits of evidence generation. Such considerations are required to avoid the injustice that arises from social, racial, sexual, and cultural biases institutionalized in society.
VI. Procedural Statements
The following are the minimum standards and required procedures for research, evaluation and data collection and analysis undertaken or commissioned by UNICEF (including activities undertaken by individual and institutional contractors, and partners) involving human subjects or the analysis of sensitive secondary data. These standards explicitly recognize and reflect the spirit and intention of the Declaration of Helsinki (1964) and its attendant amendments, emphasizing the importance of respect for and protection of human rights. More specifically, as relates to the involvement and focus on children in research, evaluation and data collection and analysis, these standards attempt to reflect the United Nations Convention on the Rights of the Child’s (UNCRC) principles of the best interests of the child, non-discrimination and participation.
Within this procedure the principles and requirements for evidence generation are applied to four core ethical issues, namely; Harms and Benefits, Informed Consent, Privacy and Confidentiality, and Compensation and Payment. In addition, they also specifically articulate UNICEF’s position on conflicts of interest and ethical funding of evidence generating activities.
Core Procedures
i. All proposals for research, evaluation and data collection processes that involve human subjects or entail analysis involving sensitive secondary data as described in Figure 1 must include a section identifying anticipated or actual ethical issues throughout the programme as well as the measures and methods anticipated or adopted to address or mitigate against these issues.
ii. All reports produced by UNICEF or by an individual or institution contracted by UNICEF relating to the above-described evidence generating activities (as highlighted in the scope of the procedure and in Figure 1 above), must include a section identifying anticipated or actual ethical issues throughout the project as well as the measures and methods adopted to mitigate against these issues.
iii. Consistent with the UNICEF Procedure for Quality Assurance in Research and the quality assurance guidance for evaluation: Evaluation “Step by Step” , ethical considerations must be explicitly considered and reviewed as part of broader quality assurance processes within the originating office.
iv. Where pre-existing legislation and policies exist in relation to local ethical standards for evidence generation, UNICEF relevant evidence generation programmes must comply with these standards. However, should local standards fail to meet those established within these procedures, the UNICEF standards must still be met by staff undertaking or commissioning those research and evidence generation programmes covered by this procedure.
v. Prior to the development of a proposal, all Terms of Reference must be reviewed by an internal staff member within the office or unit.^10 This review must be undertaken by a staff member with either relevant ethics training or sufficient technical expertise and knowledge to appreciate the ethical dimensions of the proposed evidence generation activity. TORs must explicitly reflect on the likely ethical issues that may arise and the consequent competencies required by potential consultants.
vi. All Terms of Reference for contracted research, evaluation or data collection covered by this procedure must include a section that requires contractors to:
clearly identify any potential ethical issues and approaches, as well as the processes for ethical review and oversight of the research/evaluation/data collection process in their proposal.
In the assessment of contractor proposals, articulation of ethical implications and mitigation strategies for the design and implementation of research, evaluation, data collection and analysis should be given appropriate weighting.
vii. Researchers, evaluators or enumerators involved in primary data collection involving human subjects must have undertaken basic ethics training. In the instance where no previous training has been undertaken either the implementing parties or the relevant UNICEF unit could provide this as a standalone training programme or as part of a broader training programme on the data collection process.
viii. All proposals involving research, evaluations or data collection and analysis covered by this procedure, and meeting one or more of the following criteria must go through a relevant external ethical review board or panel.
A. Evidence generation that involves vulnerable cohorts whose personal agency is limited due to age, situation or capabilities and for whom an additional duty of care is required. This includes research, evaluation and data collection and analysis that undertakes primary data collection and: Involves children as participants, researchers and data collectors; Specifically targets persons with an illness, disability or mental health issue as participants; Targets and involves a group that may be perceived as vulnerable within the local context (examples include; women, minority groups, persons with HIV/AIDS, the economically and educationally disadvantaged, persons in institutions) as participants; Involves persons within humanitarian contexts as participants (e.g. children, young people and adults in refugee camps; in conflict and post conflict transition settings and in disaster settings).
B. Evidence generation involving primary data collection that has the potential to result in direct harm to the participant during the course of the programme (through physical or psychological tests, measures or lines of questioning). This includes evidence generation activities that: Specifically explore issues related to violence, abuse or trauma; Provide health-based assessment, diagnoses and treatments as part of the programme.
(^10) This internal staff member cannot be the instigating staff member for the project, nor be the party responsible for drafting the Terms of Reference.
xi. All evidence generating activities meeting the criteria highlighted in paragraph viii. above cannot commence until a proposal has been submitted to a relevant panel and approval has been received.
xii. Where a project is required by law or in accordance with institutional requirements to be submitted to bodies whose standards do not fully meet the requirements of this procedure, projects must still meet the standards outlined in this procedure.
Procedures specifically relating to Harms and Benefits
i. All proposals must justify why the evidence generation processes covered by this procedure are being undertaken. The justification must take into account pre-existing evidence or gaps in the evidence, and must explicitly reflect on the data sources and the particular methodology applied in order to ensure that the specific approach adopted has minimized any negative impacts on participants and their communities.
ii. All proposals must justify why certain groups are included or excluded. The rights of vulnerable and marginalized groups to participate must be recognized and respected and, more particularly, measures should be taken to support the involvement or representation of under-researched groups. Respecting groups’ and individuals’ participation rights however needs to be weighed against any potential harms that may come to these groups consequent to their involvement or representation in evidence generating activities.
iii. In justifying the evidence generation process involving human subjects or involving sensitive secondary data, efforts must be made to ensure that the evidence or the data to support the evidence is not already available and publically accessible.
iv. Throughout the evidence generation process, and articulated in both the proposal and the final report, should be consideration of any potential harms and benefits for participants, their families or wider community groups. An assessment of potential harms and benefits can and should be supported by a situational analysis (using available data) including local consultation. In the instance of local consultation (particularly with implementing partners), power relationships and their dynamics should be explicitly factored into the selection of stakeholders consulted.
v. At the proposal stage, where the potential risks outweigh the potential benefits, consideration must be given to the modification or withdrawal of the proposal.
vi. Throughout the evidence generation process and articulated in both the proposal and the final report are the methods or practices adopted to ensure that participants are not harmed as a consequence of their participation from the outset of the project through to its completion and dissemination.
vii. All programmes must design and utilize appropriate methods, practices and data collection environments^15 that minimize stress for participants. These processes must be explicitly noted in both the proposal and the final report.
viii. Protection protocols for children and, where relevant, other vulnerable groups, must be in place to provide safe environments for data collection, to safeguard them from abusive or incompetent researchers/evaluators/enumerators, to respond to any safety concerns or grievances, and to refer them to local supports both during and after the evidence generation activity if necessary, given due consideration to the particular vulnerability of children and young people. For further information regarding measures to protect vulnerable participants in evidence generation processes see Annex (B) Privacy and Confidentiality.
ix. When there is conclusive proof of definitive negative outcomes for participants or their communities during the course of the evidence generation, protection protocols should be enacted and an assessment undertaken by the project managers whether the project can be modified to prevent further negative outcomes or whether the project must be stopped.
x. In all reports produced consequent to findings of research, evaluation or data collection and analysis, the privacy and confidentiality of participants should be assured with data de-identified at the individual level, or findings summarized to an appropriate level of aggregation, particularly in the instance of clear negative impacts such as stigma and reprisals.
The implications of the findings and any potential negative repercussions for particular groups should be considered and measures taken to frame the findings in such a way as to avoid these consequences. Where findings will significantly impact (negatively) on the health and well-being of groups or individuals, public disclosure and, where relevant, disclosure to specific stakeholders should be reconsidered.
These issues and relevant measures should be anticipated and noted in the proposal and (in the case of unanticipated challenges that arise post the proposal stage) addressed as they arise.
Procedures relating to Informed Consent
i. When engaging human subjects, informed consent must be sought from all participants. The nature of the informed consent must be noted in the ethics section of the proposal and any final report.
ii. Any project seeking to involve children as either participants, researchers or data collectors must, at minimum, comply with local legislation regarding the age or circumstances which allow for informed consent. In the absence of this legislation, evidence generation involving children and young people under the relevant age of majority as defined by local law must take into account their competencies and the circumstances relating to their autonomy, and, where autonomy is limited or where cultural
(^15) This can refer to the visibility and audibility of the location, the researchers, family and community members present during data collection, the facilities and amenities present etc.
v. Any assurance to participants about confidentiality must also include explicit mention of the limits to this, with relevant staff prepared to act sensitively on safety concerns in accordance with the project protection protocols and local legislation pertaining to the reporting and disclosure of abuse.
vi. Issues and measures taken to ensure privacy and confidentiality of participants must be noted in the ethics section of the proposal and the final report.
Procedures relating to Payment and Compensation
i. Payment must not be used to coerce, pressure or bribe adults or children to participate or to influence the nature of their responses.
ii. Evidence generation processes must take social and cultural contexts into account and consult locally about payment and other forms of reciprocity to determine the nature or need for reimbursement, compensation or recognition.
iii. In providing payment and compensation, explicit consideration must be given to the possibility and implications arising from the fact that payment may directly or indirectly raise unrealistic expectations or cause disappointment. In these instances, mitigation strategies must be explored and developed.
iv. Explicit consideration needs to be given to the form, timing and amount of payment or compensation to ensure that financial costs are appropriately reimbursed and that the amount does not distort the decision to participate or the responses given.
v. Issues and decisions related to payment and compensation must be noted in the ethics section of the proposal and the final report.
Procedures relating to Conflict of Interest and Funding
i. Any proposal presented to the senior management of a unit, office or division as well as proposals presented to review boards must include information regarding funding, sponsors and institutional affiliations.
ii. Any actual or potential conflicts of interests relating to specific member/s of an ethical review board or panel existing or arising consequent to specific research, evaluations or data collection and analysis projects must result in the exclusion of the board member from all deliberations and consultations pertaining to the project/s in question.
iii. Any actual or potential conflicts of interests relating to staff, contractors, contracting institutions or funders existing or arising consequent to research, evaluations or data collection and analysis must be disclosed in any proposal in accordance with UNICEF (2012) Financial Disclosure and
Declaration of Interest Statements , Executive Directive CF/EXD/2012-003^18 to determine whether it is appropriate for the project to proceed see ANNEX (D) for further detail.
iv. Where an evidence generation project is given appropriate authority to proceed, conflicts of interest should still be noted in all relevant proposals to ethical review boards or panels and research publications in accordance with the Procedure Relating to Quality Assurance for UNICEF Research.
v. Funding for evidence generation must not be sourced from industry sectors or organizations identified within UNICEF’s policy of zero tolerance as laid out in Building Alliances for Children – UNICEF Guidelines and Manual for Working with the Business Community (2001) and revised in Briefing Note on Screening Criteria for the Development of Corporate Partnerships. Further, all prospective funding bodies and institutions must follow the appropriate screening process undertaken by the Corporate Intelligence Fundraising unit of the Private Fundraising and Partnership section^19 of UNICEF.
VII. Accountabilities, Roles and Responsibilities
Establishing and Ensuring Appropriate Procedures relating to Ethical Oversight
(a) The role of the project manager for the specific evidence generation project under consideration, or the country focal point for a particular data collection project that meets the requirements of this procedure, will be to ensure that their project is in compliance with this procedure. Where projects meet the criteria established in section v. of the core procedures and are not part of routine data collection and monitoring and evaluation, and in the instance where a formal ethical review process is not required by a national or institutional ethics review board, the project manager must ensure that either (a) a local national ethics review board or other institutional review board is sought out to undertake the ethical review or (b) that an external ethics review panel as prescribed is established.
The project manager or country focal point will be required to ensure the protection of staff, participants and relevant communities throughout the project from the outset of implementation through any monitoring and evaluation phases and finally in the dissemination of findings. During the implementation and delivery of the project, ethical review boards must be notified of any issues arising relating to the violation of the current procedure during the course of the project. In these instances, the project manager will also be responsible for undertaking immediate action involving appropriate modifications or implementation of relevant protection protocols and procedures. If significant negative outcomes cannot be avoided, the project manager or country focal point will be required to ensure the immediate cessation of the project, informing relevant managers, participants and review boards or ethics panels.
(^18) Further advice regarding conflict of interest can be found in UN (2013) Standards of Conduct for the International Civil Service , International Civil Service Commission, New York. (^19) See UNICEF Briefing Note on Screening Criteria for the Development of Corporate Partnerships, May 2011. https://intranet.unicef.org/GENEVA/fundraising.nsf/pageid/46E3033AE3B089E48525765100282BCF/$FILE/2011updateonscreeningcriteria.pdf
VIII. Risk Management
Typical Risks to this Procedure Minimum Expected Mitigation Measures (relative to each Risk identified)
1. Governance and Accountability Lack of appropriate oversight for ethical processes. 2. Funding and External Stakeholder Relations Managing expectations of time frames of funders and stakeholders consequent to the additional processes required for appropriate ethical review. 3. Budget and Cash Management In light of the additional requirements/ recommendations including internal and external (where relevant) reviews, the time frames and resources for research programmes may increase.
Requirement for ethical review of projects meeting criteria as stated in procedure.
Graded requirements for ethical oversight in accordance with the determination of the depth of the review process by a review board. Clear articulation to funders and stakeholders of the value of ethical oversight in ensuring the rigour and external validity of the research. Appropriate accountabilities established as noted in section VI. above.
Clear articulation to funders and stakeholders of the value of ethical oversight in ensuring the rigour and external validity of the research.
IX. ANNEX
Annex (A) Which External Review Mechanism to Utilise
If you are undertaking research in multiple sites across regions external review is currently required at each site, not for the programme as a whole.
Does your contracting organization have a recognized institutional ERB process that it is required to submit its ethics approval to?
Are you required under legislation to submit your proposal to a national ERB?
Are you required by funders to submit your proposal to a particular institutional/national ERB?
Do you have access to a recognized local/institutional ERB, that has the technical expertise and rigour to undertake an ethical review process that is consistent with these procedures?
Institutional ERB: University ERB Sector/Industry Board ERB Hospital IRB
National ERB
Pre-existing UNICEF Regional/Country office external review boards (if they meet the standards outlined in this procedure)
or, if not present
Establish expert ethical review panel at local (likely national) level. None of the above apply
Annex (C) Anonymising and Storing your Data^20
1. Anonymising Data
Quantitative data Remove or do not collect direct identifiers (e.g., personal information such as names and addresses). Where this is not possible, i.e., in the instance of panel surveys, data access, storage and security becomes even more critical and those who have access to the identified data should be limited (see data access, storage and security section below for more detail). Aggregate or reduce the precision of variables that might be identifiable (such as postcode). Generalise text variables to reduce identifiability (in reports). Restrict continuous variables (examples of continuous variables include height and age – i.e. anything that is measurable and therefore identifiable), to reduce outliers (those variables that are outside the norm and therefore easily identifiable). Pay particular attention to anonymising relational data – some anonymised variables may become identifiable when considered in combination. In the instance of geo-referenced data, use encryption coding to transmit information and consider de-identifying, de-locating data or, if not feasible, the assignation of data to broader geographical areas.
Qualitative data
Anonymisation of qualitative data can be particularly complex, and is not simply a matter of removing personal information such as names or addresses, or of using pseudonyms. A distinctive event or combination of descriptions in a qualitative account could make somebody recognizable. These concerns can mean that qualitative data can need some editing to ensure their anonymity but the UK Data Archive warns that: Whenever editing is done, researchers need to be aware of the potential for distorting the data. For example, deleting all possible identifiers from text or sound recordings is a simple but blunt tool that creates data that are confidential but may be unusable.
2. Data Access, Storage and Data Security
Whether you are collecting new data or accessing existing data, you need to consider: how data will be stored; who will have access to the data; and how they will be able to access data.
Remember, research ethics is all about unanticipated events – so you need to plan for unexpected and undesirable events.
(^20) Boddy, J., Neumann, T., Jennings, S., Morrow, V., Alderson, P., Rees, R., and W. Gibson (2014). The Research Ethics Guidebook: A resource for social scientists, University of London, http://www.ethicsguidebook.ac.uk/, accessed, 4 march 2015.
Your planning should take account of what you need to do with hard copies (such as paper notes of interviews), computer files with anonymised data that are not identifiable, and computer files with personal or identifiable data.
Hard copies such as interview notes, prints of photographs, or video or audio tapes need to be kept securely locked away – for example in a locked filing cabinet that can only be accessed by agreed members of the research team. Ask yourself:
Who needs to have access to hard data? Will these data be anonymised before they are stored? If not, why not? Will these data be stored separately from personally identifying data? Where will the key be stored? Could anyone (outside key personnel) find and access the data? How will you deal with hard copies in the period between data collection and data storage?
Files – including computer files – that contain personal or identifiable data (such as names). These files need to be encrypted or password protected, and only accessed by agreed members of the team. Particular care needs to be taken if you are sharing files within the research team – e.g. on shared computer drives, or by email – or if you are transferring personal data beyond the research team (e.g. if a gatekeeper is giving you a list of contacts).
Computer files including anonymised data still need to be held securely, and can only be shared according to the terms of your consent from participants. Thus, for example, you need to get prior consent from participants if you plan to archive data for use by other researchers. To ensure that anonymised or personal data are only accessible to those who have been agreed (such as your immediate team) you may need help to set up additional security systems. Consider the following example:
A research team is conducting a mixed methods study, collecting quantitative and qualitative data from elderly participants in residential care. The study is concerned with the effect that physical exercise has on their health, and so is collecting biomedical data (e.g., blood pressure, cortisol levels) as well as conducting in-depth interviews about participants’ day to day lives. So the team has a number of data sets: personal information about participants, and where they live; quantitative data from biomedical tests; and digital audio-recordings and transcripts of interviews. These data give rise to two key considerations:
_1. Data should be accessible to team members, but no one else. The team work across two institutions: both have computer servers with shared drives that are accessible to all staff within the institution. The researchers need to set up secure systems (a) to ensure that other staff within their institutions cannot access their data via the shared staff drives, and (b) to ensure secure data transfer between institutions. Cloud based storage with limited sharing rights could be considered in this instance.
- Different data files need to be link-able, they need to be held separately so that they can only be linked purposely, by researchers who are authorised to do so. There is also a need to ensure that data cannot be removed from secure systems in ways that might compromise data security. For example, if anonymised data sets might become identifiable in combination, they should not be downloaded onto the same USB stick – what if it was lost and found or misused by someone else?_
