Welcome to the iCAN Partner Survey

Background: An iCAN Partner is leading a workshop at an upcoming conference where we would like to start a conversation with adults and compare to youth responses about situations involving youth regarding their rights and opinions about their health care management and during participation in clinical trials.  At this conference we will highlight iCAN as a contributor. We are very excited to obtain the opinions of youth on the below and look forward to sharing the results of the workshop with you.  All responses must be completed by September 5th, 2019.  

In the United States and other countries, there have been more cases of outbreaks for diseases for which we have vaccines. For example, measles. Some parents do not want to vaccinate their children, which leaves children vulnerable to these preventable illnesses. Some of these children have looked to see if they can get vaccinated even if their parents do not agree. 

This year, a high school senior named Ethan Lindenberger spoke to US Congress about how his parents were against vaccinations and did not have him vaccinated, so as soon as he turned 18 years old and could provide his own consent, he went to get his own vaccinations. There are other adolescents who are asking to be vaccinated even though their parents do not give permission. There are now some states in the USA that do let adolescents get vaccinated even if their parents don’t want them to.

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* 1. Do you think that adolescents/children should be able to consent to vaccinations without parental permission?

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* 2. If you answered yes, than what age should adolecents/children be able to consent to vaccinations without parental permission

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* 3. What do you think are the most common reasons for a child not participating in or dropping out of a clinical trial?

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* 4. Do you think the reasons are more likely to be due to the child’s concerns (examples may be a child might not wanting to go to the doctors appointments or have procedures like blood tests or not understanding how it will help them, etc.), or the parent's concerns (examples may be moving for a job, too busy, disagreeing with research)?

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* 5. Please answer the below question after reading the scenario.

A 14 year old girl, Elle, lives in a country where the age of consent(right to agree to participate in a study without a parent’s permission) is 18 years old, but, in this country she has the right to medical privacy at a younger age which is 13 years old. This means that from the age of 13, Elle has the legal right to speak to her doctor alone without her parents there.   The doctor must also ask Elle for permission to tell her parents anything about her health. According to the law, if Elle says no, the doctor must not tell her parents. This includes topics such as sexual activity, pregnancy, contraception and sexually transmitted diseases.  

Joining a clinical trial: 

Elle has a condition for which there is a clinical trial that she, her parents and her doctor think is a great opportunity for her to join in. She agrees to this and signs the assent form, and her parents provide their permission/informed consent on her behalf. Elle starts on the trial and everything is fine. She has regular checkups with the doctor and nurses. 

Withdrawing from the trial: Unknown to her parents, Elle is sexually active, and while on trial, she gets a sexually transmitted infection (STI). This STI is easily treated by her doctor with a medicine (antibiotic). However, use of any other medicines is not allowed on this clinical trial, so Elle must stop taking the study drug, and must withdraw from the trial. This happens during trials all the time, and is fine in that she is not in any sort of trouble from the doctor or the companies running the trial. The most important thing is that she is treated and gets healthy.

The issue:  

The doctor asks Elle if her parents can be told about the STI. Elle does not want her parents to know that she is sexually active, or that she got an STI. However, per the parental permission/informed consent signed to be in the trial, the parents are entitled to know the reason Elle being withdrawn from the study.

Should Elle's parents be informed of the reason for withdrawing from the study?  Yes or no.  

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* 6. Please share your age: 

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* 7. Please share your gender:  

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* 8. Please share your country of residence. 

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