Informing Research Participants
Research data may be collected in a number of ways, through survey questionnaires, interviews, written accounts or video recordings, etc. In all cases, research participants must be informed of how the data will be used. Researchers are henceforth bound by the information given. If the data contain personal identifiers, information given to participants determines whether the data can be re-used later or whether the material must be destroyed as soon as the validity of the results has been confirmed.
This web page contains guidelines on how to inform research participants in a manner that at least researchers themselves will be able to use the data in the future. Information given to participants should also allow researchers to archive the data, should they want to. The guidelines provided here refer to the situation in Finland, and may not be applicable in other countries due to differences in legislation.
Researchers should plan the whole life cycle of data before data collection begins. They can then use the life cycle plan as a starting point when planning what kind of information to give to research participants. The following issues should be considered when planning the information to give:
- Reuse potential of data
- Relevant legislation
- Protection of confidentiality
Taking the reuse potential of the data into account includes ensuring that the data can be used even after the original research project has ended. Restrictions that the Finnish Personal Data Act imposes on preservation and processing of data containing personal identifiers must also be taken into account. As regards confidentiality of the material obtained, both promises given to participants prior to data collection and the legislation are relevant.
When researchers are planning what kind of information to give to participants, the following aspects should be taken into consideration: degree of sensitivity of the data, feasibility of anonymisation, and probability that the data will be used for other research projects. After these points have been considered, the list below can be used for checking other relevant issues. The amount of information given on each listed issue depends on the subject matter and degree of sensitivity:
- Contact information of the responsible researcher/research team
- Purpose of the research
- Voluntary nature of participation
- Protection of privacy and confidentiality
- Use, preservation and disposal of data
- Use of other information sources
Information on these issues can be given in an information sheet, cover letter, or as a document attached to the form. The goal is to gain informed consent from participants. If the subject matter of the research is not sensitive and data are collected in a public place, verbal information is sufficient.
Participants should be told in writing who is responsible for the research and who can be contacted for additional information. Participants have the right to be told the funder(s) of the research. It is also important to tell participants the source from which their contact information has been obtained.
Participants should be given comprehensible information about the purpose and general goals of the research. It is good practice to motivate participants by telling them what kind of new knowledge is sought for, and how the research results may be utilised. Detailed information about the study problem and hypotheses are not needed but main subjects must be cited in order to allow potential subjects to make an informed decision about participation.
Participation in research is always voluntary. Potential participants need therefore to be told what participation entails in practice: is it a question of a one-off data collection, does it require active participation and what kind of participation, and how much time will it take.
A written consent is not always necessary. In large questionnaire surveys, for example, completing the questionnaire and returning it to the researcher or research team can in itself be interpreted as an implied consent to participate. The same applies to requests for written accounts in qualitative research. Even in the case of interviews, oral information given by the researcher is usually sufficient.
If there is no intention to anonymise the data and information collected is sensitive, it is recommded to have a separate consent form for participants to sign. The consent form can be sent together with the information sheet or cover letter, or it may form part of the information provided.
Regarding the participation of children in research, the Finnish legislation only refers to childrens' participation in medical research. Since permission from the parents is always required, there are no other laws connected to the required age for participation in research. Sometimes an age limit of 12 years is applied but more important than age limits is to make sure that participation is voluntary and that children can, if need be, decide themselves whether to participate or not. Naturally, in order to make such a decision, children or young people need to be able to understand what participation in research entails.
Participants must be able to trust that their personal privacy will be maintained. Information obtained from participants must never be used or handed over to be used in decision-making concerning them. Researchers must never talk or write about information obtained from a particular participant using his/her personal identifiers unless explicit consent has been obtained for this. To talk about or convey information obtained from research participants in a derogatory or otherwise inappropriate manner is unacceptable.
Researchers usually promise participants that research results will be reported in a manner that the identity of participants will not be revealed. Participants can also be told how long personal identifiers will be preserved. However, the most important thing is that the researcher/research team themselves have a plan on how to handle identifiers.
Personal identifiers include Personal Identity Numbers, names, addresses and telephone numbers. Unprocessed audio and video recordings, as well as photographs, may also constitute risk of identification. The Finnish Personal Data Act states that a dataset from which participants can be identified must be destroyed immediately after the original research project has ended, unless participants have given consent to some other option. It is therefore possible to preserve data containing identifiers if the participants have been informed of and consented to this in advance.
If the aim is to anonymise data, it is good practice to mention this to participants. If the proposed measures cannot guarantee absolute anonymity, particular care should be taken in the processing and handling of sensitive data. One option is to ask all persons processing or analysing the data to sign an individual confidentiality statement. Confidentiality statements may sometimes be a better solution than anonymisation. Participants may also be told if there are plans to place restrictions on the use of the data, and if the users will have to commit themselves to certain procedures and sign an agreement to that effect.
Even if no plans for the reuse of data have been made by the time the original research projects ends, it is still worthwhile to bear the possibility in mind. If the data are to be preserved for later scientific use, participants need to be informed of this.
The simplest solution is to inform participants that the data will be used for scientific purposes only, in other projects on a similar subject. This information implicitly excludes reuse for other than scientific purposes. Privacy and confidentiality must be protected by meticulous processing and preservation procedures and, if necessary, by requiring a confidentiality statement from data users.
If more than one person will process the data, participants should be informed of this. For standard research practices, verbal communication is sufficient. It is very important, however, not to leave participants under the impression that the data will be processed only by the person collecting the data, if this is not the case.
If participants have been promised that the data will be used for one particular research project only, and if the data contain identifiers or otherwise constitute risk of identification the dataset must be disposed of as soon as the validity of results has been reviewed. However, if the dataset is anonymised the current legislation allows reuse even if participants have not been informed of reuse.
In cases where further information about the participant will be collected from other sources, an explicit written consent from participants is required. This issue often arises in research where interview data will be combined with, for example, official records or register information concerning an individual participant. Participants must receive written information on the possible uses of such combined data, as well as on the anonymisation and protection measures applied.
- Qualitative non-sensitive interview
- Qualitative interview which will be anonymised
- Request for personal written documents
- Combining survey/interview data with register data
- Information on interview or questionnaire survey
- Confidentiality statement
Begin the letter to potential participants with basic information on the research/study and who is responsible for it (with contact information). Then you can specify, for example, that:
If extracts from interviews are quoted in research reports, the names of interviewees and of people they have mentioned will not be presented.
Interviewees' contact information will be destroyed after the research project has been completed. Transcriptions and audio tapes of the interviews will be archived permanently at the Finnish Social Science Data Archive to be reused for research and teaching purposes.
Naturally, if interviewees prefer to be presented with their real names, pseudonyms are not used. Indeed, it is sometimes better to report the results of expert interviews using the real names of interviewees. The researcher and the interviewees should discuss and agree on before data collection whether real names or pseudonyms will be used. Consistency in naming conventions makes the work easier and ensures that research participants are treated equally.
If interview topics are not sensitive it may be enough to give verbal information to participants. The following is an example of giving information in a situation where the researcher is recruiting research participants near a winter swimming place (a hole cut through the ice of a frozen lake):
I am xx from the University of Tampere and I'm looking for volunteers to participate in an interview study about winter swimming. I carry out the study, sponsored by the Society of Tampere Winter Swimmers, with my assistant xx. My goal is to study perceptions and experiences of people practising winter swimming, concentrating especially on ... The interview will take about an hour and I will record it with this audio recording equipment. After my study has been completed the audio tape will be archived permanently at the Finnish Social Science Data Archive for research and teaching purposes. The names of interviewees will not be mentioned in research reports.
In our example cases above, the information given to participants does not refer to confidentiality issues. This is because confidentiality is taken to be constituted by restrictions of use: only for scientific research and teaching. Data containing identifiers will be archived at an archive which imposes strict conditions on the reuse of the data, and which itself follows good practices in data security. If the researcher has promised that the names of the interviewees will not appear in research reports, the same applies to the archived data.
Begin the letter to potential participants with basic information on the research/study and who is responsible for it (with contact information). If the subject matter is sensitive the letter should contain information on the processing and storing of the data:
Research findings will be reported in a manner which prevents identification of any participant or person mentioned in the interviews.
To protect privacy, research assistants and researchers who process the audio tapes recorded of the interviews will be requested to sign a confidentiality statement.
When the interviews are transcribed the names of the interviewees and of other persons mentioned in the interviews will be changed into pseudonyms. The same procedure will be used for the names of organisations/institutions and place names.
When the research is completed, interview audio tapes and contact information to participants will be destroyed. Interview transcriptions will be archived permanently at the Finnish Social Science Data Archive for scientific research and teaching.
The information given to participants can be more or less detailed, depending on what kind of processing have been planned for the data. If interview topics are not particularly sensitive it is worthwhile to take this into account when planning the level of anonymisation. If the data will be anonymised only partially, the following information may be given of the storing and processing procedures:
Research findings will be reported in a manner which prevents identification of any participant or person mentioned in the interviews. When the interviews are transcribed the names of the interviewees and of other persons mentioned in the interviews will be changed into pseudonyms.
The audio tapes recorded of the interviews and contact information to the participants will be destroyed after the research has been completed. Interview transcriptions will be archived permanently at the Finnish Social Science Data Archive for scientific research and teaching purposes.
Begin the letter to potential participants by giving basic information on the research/study, and by encouraging people to participate. Also give information on the research team, with contact information of the responsible researcher. Next, you can give information on how the data will be processed and stored:
Please state your name, address, age, and profession or former profession. You can also send the text using a pseudonym but even in that case please state you age, gender, and profession or former profession in the beginning of the text. Your text can be as long or short as you want. There is no reward, and the texts will not be returned.
If extracts from the texts are quoted in the research reports, person names and other names enabling identification (e.g. the names of schools and workplaces) will be replaced with pseudonyms.
When the research is completed, the texts will be archived at the Finnish Social Science Data Archive for further research. People reusing the archived texts will be requested to comply with the conditions of use imposed by the FSD and asked to sign a confidentiality statement. If you do not want your text to be archived, please state so clearly in the beginning of the text. In that case your text will be destroyed after the research has been completed.
Due to the fact that people living in Finland have an identity number, it is possible to combine individual level data from different registers or survey/interview data with register data. In that case, a specific written consent must be obtained from research participants.
If data from a postal survey are combined with register data, the researcher needs to specify in the information given to potential participants what register data will be combined with the survey data, how the combined dataset will be used and where it will be stored. If the potential respondent decides to participate in the survey after receiving that information, he/she can be considered to have given an implicit consent to combine the data.
In cases where interview data are combined with register data, it is good practice to ask participants to sign a consent form for this. The information attached to the consent form can say the following on the use, processing and storing of the data:
I have been given information on the research project xx and its objectives. The information held about me on the registers A and B may be linked to the information I will give in the interview. I have received the following promises regarding the combined data:
The information I give in the interview is confidential. It will not be given to people responsible for the registers A and B, nor to other authorities or outsiders. Thus the services I receive from these bodies are in no way be affected by the fact that I do or do not participate in the research or withdraw my participation.
My name and identity number will be removed from the data as soon as research findings have been validated. Research findings will be published in a manner that will prevent identification of any participant.
The combined dataset, of which direct identifiers have been removed, will be permanently archived for further research and teaching purposes.
When register data are linked to data obtained from other sources, data protection measures require careful planning. Sometimes it is safest that researchers analyse only the combined dataset from which identity numbers have been removed. More information on register data in Finland: Finnish Information Centre for Register Research (ReTki).
Begin the letter to potential participants with basic information on the research/study and who is responsible for it (with contact information). If the subject matter is not sensitive the letter can contain the following information on how the data will be processed and stored:
Your responses shall be processed in a manner which prevents identification. The data will be permanently archived in a digital format at the Finnish Social Science Data Archive for scientific research and teaching purposes.
If the information obtained from participants is of sensitive nature, the content of the cover letter/information sheet should be adapted to planned life cycle of the data and planned processing and anonymisation measures. It is essential to plan carefully what kind of measures will be needed to protect confidentiality and privacy.
If a dataset contains both sensitive information and direct identifiers, it is good practice to require that all persons who use and process the data must sign a confidentiality statement. The confidentiality statement may state the following, for example:
I undertake not to report in any way to any outsider information pertaining to individuals that the data contain. Reporting in this context is taken to mean any communication, official or unofficial, be it verbal, written or electronic.
I will not use the information about any participant, their family or other individuals that the data contain to damage, harm or insult them.
I undertake not to deliver or copy the dataset or parts of it to any outsider. I will deliver the data or part of it only to those members of the research team who have signed a confidentiality statement regarding its use.
I undertake to destroy the data and all copies of it as soon as the research has been completed and research findings validated.
According to Section 11 of the Personal Data Act, personal data are deemed to be sensitive if they refer to:
1) race or ethnic origin;
2) trade union membership, religious, social or political affiliation;
3) criminal acts, punishment or other criminal sanctions;
4) an individual's state of health, illness or handicap, medical treatment or other comparable measures;
5) sexual orientation or behaviour; or
6) need for social welfare, or social welfare services and benefits received.