1. Ethical and legal considerations

2. Some tensions between the legal situation and real world situation Children are legal minors until the age of 18 Many enter the workforce at 16 Many more work ‘part time’ at younger ages Many drive cars at 17 Government tried to introduce voting at 16 Sexual age of consent is 16 Many young people are sexually active at 14 UK has highest rate of teenage pregnancies Many under 16s receive contraception without parental knowledge or consent Age of criminal responsibility is 10 Children have no entitlement to any commensurate power, consent, authority or any other legal responsibility at age 10 Parents can ‘smack’ 10-year-olds but a 10-year-old may be criminally liable for ‘smacking’ another individual

3. Legal ‘consent’ versus ethical consent Third party consent: (consent of parent/guardian required up to age 18 (with a few exceptions: e.g. contraception; ‘Gillick ruling’) Assent Consent by proxy ‘Informed’ consent Ongoing consent

4. Discussion Is everything that is legal necessarily ethical? Are there any legal/ethical constraints which could affect the role of children as active researchers?

5. ‘Informed’ participation It is for you to decide if you want to talk to me. You do not have to say `yes’. If you do say `yes’, you do not have to do the whole interview. We could stop when you want to, or have a break. If you do not want to answer some of the questions, you can just say `pass’. Before you decide whether to help me, you might like to talk about this project with your parents or with a friend. I keep tapes and notes of the interviews in a safe, lockable place. When I talk about the research and write reports, I always change people’s names, to keep their views anonymous. I would not talk to anyone you know about what you have said, unless you talk about the risk of someone being harmed. If so, I would talk with you first about what could be done to help. {Alderson & Morrow, 2004}

6. Ethical tensions and dilemmas Costs versus benefits (potential benefit for many versus probable harm to the few) Use of data from questionable research designs

7. Ethical research design Confidentiality and anonymity Harm Deception coercion

8. Ownership of data Full information about how data will be used; Should data be destroyed once it has been analysed? If data is to be stored long term who owns it ? -the researcher? the participant(s)? guardians of participants? all of these? other??

9. Examples of questionable practice Involving participants without their knowledge or consent Coercing them to participate Withholding information about the true nature of the research Persuading participants to engage in acts which diminish their self esteem Invading privacy Exposing individuals to physical, mental or emotional stress Withholding a benefit in order to prove a causal link in a comparison group Lack of consideration and/or respect for participants

10. Informed consent dilemma An eleven-year-old boy, Darren, is dying from a very rare form of cancer. There is no known cure and he only has a few months left to live. Researchers are in the process of developing a new drug which they think may be able to cure this cancer in the future if it could be caught at an early enough stage. The drug is not perfected yet and even if it were, Darren’s cancer is already far too advanced for it to be able to cure him. However, doctors could learn a lot more about the drug and its potential if they could test it out on Darren. Although this would not help Darren it could benefit many more children in the future. There is a possibility that there might be some side effects from the drug but the doctors cannot be sure as it has not been tested on humans before. Darren’s parents are against this and are refusing to give their consent. They want Darren to have the best possible quality of life and to be left in peace for the few months he has left. But Darren would like to help the doctors and says he wants to do some good with his life before he dies. Who should have the final say on consent? Should Darren, aged eleven, be allowed to overrule his parents or should his parents wishes prevail? Who else might influence the decision-making process?

11. Role play character parts Darren:wants to have the drug and insists it’s his body and his life; Mother:upset, wants Darren to be left in peace so that they can make the most of the time they have left together; Father:angry that the doctors should have approached Darren with this proposal, says this is emotional blackmail and that Darren is being exploited; Sister (aged 14): Supports Darren; Nurse:Undecided