Informed consent is the process by which a participant will be fully informed about the research in which s/he is going to participate. It originates from the legal and ethical right the participant has to direct what happens to his / her body and personal data, and from the necessity of the investigator to involve participants in research.
A distinction between three informed consent elements is possible: the information given, the capacity to understand it and the voluntary nature of any decision taken.
The written information as well as the sought informed consent in general corresponds to information gathered from the revised version of the Helsinki Declaration of 1964, as lastly amended in Tokyo, 2004, and the Convention of the Council of Europe on Human Rights and Biomedicine (1997).
In seeking informed consent, and according to the American Psychological Association (2002), the following information shall be provided to each participant (or, for minors, to the person responsible for him/her):
- the purpose of the research, expected duration, and procedures;
- the possible risks, discomfort, adverse effects, and side-effects (if any);
- a description of any benefits to the participant or to others which may reasonably be expected from the research;
- explanations on confidentiality of the data;
- their right to decline to participate and to withdraw from the research once participation has begun;
- whom to contact for questions about the research and research participants rights.
Within the INCLUSO project, several types of informed consent forms have been used depending on the purpose of the information collection. They are detailed below.
Ethical issues related to Focus groups
Focus groups are often organised to learn for existing experience, to plan for new actions and obtaining support for them etc. User groups can possibly involve the youngsters themselves.
In the first type of focus groups, specialists, coaches, researchers and persons with practical experience in the study field are grouped. As, during these meetings private information could be given or referred to, all participants have to give their consent explicitly. Information on the consent procedure and the consent form text are provided for download below.
In some focus groups, youngsters themselves are participating. Therefore a slightly modified procedure and consent form are needed. Their definitive forms might have to be adapted to the national legislations concerning youngsters (e.g. taking into account the age to be considered as an adult). Furthermore it should be stressed that a language, adapted and comprehensible to youngsters, should be used. The consent procedure and the consent form text for this type of focus groups can be downloaded.
Ethical issues for pilot tests with youngsters
When projects address directly a group of youngsters, project partners have to pay a lot of attention to the ethical and privacy aspects.
The use of social software implicates that youngsters will register into online platforms. They will be invited to create user profiles and to respond to inquiries that can contain personal information. This implies that all participants in the pilots should be very well informed about the impact.
As the pilots involve children, parents and/or legal representatives should be informed about all aspects of the planned pilot actions.
Children can only be allowed into the pilots with parents’ (legal representatives) consent. During the recruitment of participants for the pilots, full information shall be given to the children and their parents (legal representatives) about all aspects (contents, actions, goals) of the pilots. Children and parents can choose to join the pilots out of free will and no reimbursements will be offered nor requested. A consent document will be signed by all participants and/or their legal representatives.
In some cases, hardware and/or software will be put at the disposal of the participants of the pilots. Clear information about the ownership of this hardware and software will be given.
Taking part in online activities enables participants to publish information on the web. All participants will therefore be informed about general issues as intellectual property rights and the code of conduct that is expected.
All participants (and parents) will be informed about the use of the measurement tool on social inclusion, what kind of information will be collected and how this information will be treated.
Personal information shall, under no circumstances, be revealed or passed on, even not to other partners in the project.
At the end of the pilot, results of the research and plans for the future will be communicated to all participants and their legal representatives. They will be offered to sign a termination form that ends the pilot. In case hardware or software is left at the disposal of the pilot participants after the pilots’ termination, clear conditions shall be communicated.
Pilot participants can, at any moment, leave the pilots without having to give an explanation. They will, under no circumstances, be forced to remain in the pilots. This will be communicated to them at regular points in time.
Youngsters, like some adults, are often not aware of the fact that everybody can see everything they put online if they do not manage correctly the privacy settings of the social software platforms.
Some youngsters even are precisely looking for this effect and they want to tell and show everything to everybody. Marginalised youngsters are often very vulnerable and are an easy prey for unscrupulous or aggressive commercial activities, identity theft, bullying and indecent proposals.
Staff members have mentioned that some of the youngsters already have problems with addiction to games, chatting and other internet related activities.
Parents are often ICT-illiterate and react in extremes: "no control at all" or "everything is forbidden: no computers in our house"
All these issues most certainly show that there is a need to develop working methods and to see these potential problems as an opportunity to start the discussion with the youngsters. Youngsters will go on-line anyhow.
Coaches, like parents, should be aware of this and make appropriate behaviour on the web a full part of their educational tasks.