1. A Vast Geography with Scarce Population: Due to the vast geography, many youth live in a different community than their parents. Mandating parental consent imposed logistical barriers that threatened to seriously lower recruitment. NORTHERN ONTARIO 6% of Ontario’s population ~ 8 0 4 , 0 0 0 p e o p l e 90% of Ontario’s landmass 8 0 2 , 7 7 5 k m 2 s i z e o f F r a n c e + G e r m a n y c o m b i n e d ! WHEN DOES “YES” MEAN “YES”? Is parental consent a necessary component of obtaining informed consent from minors in Canada’s indigenous context? C. CHENG 1,2 - S. NADIN 1 - M. KATT 3 - P. BRAUNBERGER 1 - B. MINORE 3 - CS. DEWA 2 1. 2. 3. Background Challenges to Obtaining Parental Consent Results: Description of Process The Solution: Capacity Assessment Conclusion Method: Description of NorthBeat YES YES MEANS WHEN THE YOUTH IS DEEMED CAPABLE. Researchers are conventionally required to obtain parental consent for youth participation in research, yet in some research contexts that convention is impractical, and more importantly unethical. The capacity-to-consent protocol used in the NorthBEAT project is a feasible and ethical alternative for researchers facing dilemmas around the requirement of parental consent. We argue that consent of a capable minor is sufficient to allow for participation for research. ARE THERE CONTEXTS WHERE OBTAINING PARENTAL CONSENT IS IMPRACTICAL, AND EVEN UNETHICAL? NorthBEAT is a descriptive research project that explores the mental health service needs of youth in Northern Ontario (Canada). Participants are Aboriginal and non-Aboriginal youth (< 18 years) who are receiving service for a severe mental illness. Through interviews, they describe their functional status and experiences with accessing mental health service. The research context presented significant challenges to the conventional practice of requiring parental consent. Researchers who study children are often required to obtain parental consent before a minor can participate in the research. The NorthBEAT project presented a research context which illuminated an important question: Faced with those challenges, we were forced to consider ethical alternatives for obtaining informed consent from minors. Informed by the literatures on childrens’ right/capacity to provide consent, we adopted a capacity-to-consent protocol. Prior to asking for consent, the interviewer assesses whether the participant understands the project and the consequences of participating (e.g., Can you describe to me what NorthBEAT is about and what I am asking you to do?). Only those participants deemed “capable” of understanding the project and consequences of participation are asked to consent to the research. Our Research Ethics Board approved protocol involves a two-step procedure to capacity assessment. Potential participants were informed about NorthBEAT by trained clinicians who were instructed to inform only “capable” clients of the project (i.e., those they deem capable of understanding the study purpose and procedures). Step 2: CAPACITY ASSESSED DURING THE INFORMED CONSENT PROCESS Step 1: FRONTLINE CLINICIANS INFORM ONLY “CAPABLE” YOUTH ABOUT THE PROJECT PRIVATE OUT KEEP Parents don’t always know about their child’s mental health issues. Requiring parental consent minimizes participants’ right to privacy with respect to health information. 2. The Right to Privacy: Toronto B.E.A.T. Barriers to Early Assessment & Treatment

(2013) When does Yes Mean Yes? Is parental consent a necessary component of obtaining informed consent from minors in Canada's indigenous contezx?

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Page 1: (2013) When does Yes Mean Yes? Is parental consent a necessary component of obtaining informed consent from minors in Canada's indigenous contezx?

1. A Vast Geography with Scarce Population:

Due to the vast geography, many youth live in a different community than their parents. Mandating parental consent imposed logistical barriers that threatened to seriously lower recruitment.

NORTHERN ONTARIO

6% of Ontario’s

population

~804,000 people

90% of Ontario’s landmass

802,

775 km 2

size of France + Ger

man

y co

ined

WHEN DOES “YES” MEAN “YES”?

Is parental consent a necessary component of obtaining informed consent from minors in Canada’s indigenous context?

C. CHENG1,2 - S. NADIN1 - M. KATT3 - P. BRAUNBERGER1 - B. MINORE3 - CS. DEWA2 1. 2. 3.

Background

Challenges to Obtaining Parental Consent

Results: Description of Process

The Solution: Capacity Assessment

Conclusion

Method: Description of NorthBeat

YES

YESMEANS

WHEN THE

YOUTH IS DEEMED CAPABLE.

Researchers are conventionally required to obtain parental consent for youth participation in research, yet in some research contexts that convention is impractical, and more importantly unethical.

The capacity-to-consent protocol used in the NorthBEAT project is a feasible and ethical alternative for researchers facing dilemmas around the requirement of parental consent.

We argue that consent of a capable minor is sufficient to allow for participation for research.

ARE THERE CONTEXTS WHERE OBTAINING PARENTAL CONSENT

IS IMPRACTICAL, AND EVEN UNETHICAL?

NorthBEAT is a descriptive research project that explores the mental health service needs of youth in Northern Ontario (Canada).

Participants are Aboriginal and non-Aboriginal youth (< 18 years) who are receiving service for a severe mental illness. Through interviews, they describe their functional status and experiences with accessing mental health service.

The research context presented significant challenges to the conventional practice of requiring parental consent.

Researchers who study children are often required to obtain parental consent before a minor can participate in the research.

The NorthBEAT project presented a research context which illuminated an important question:

Faced with those challenges, we were forced to consider ethical alternatives for obtaining informed consent from minors.

Informed by the literatures on childrens’ right/capacity to provide consent, we adopted a capacity-to-consent protocol.

Prior to asking for consent, the interviewer assesses whether the participant understands the project and the consequences of participating (e.g., Can you describe to me what NorthBEAT is about and what I am asking you to do?). Only those participants deemed “capable” of understanding the project and consequences of participation are asked to consent to the research.

Our Research Ethics Board approved protocol involves a two-step procedure to capacity assessment.

Potential participants were informed about NorthBEAT by trained clinicians who were instructed to inform only “capable” clients of the project (i.e., those they deem capable of understanding the study purpose and procedures).

Step 2:CAPACITY ASSESSED DURING THE INFORMED

CONSENT PROCESS

Step 1:FRONTLINE CLINICIANS INFORM ONLY

“CAPABLE” YOUTH ABOUT THE PROJECT

PRIVATE

OUTKEEP

Parents don’t always know about their child’s mental health issues. Requiring parental consent minimizes participants’ right to privacy with respect to health information.

2. The Right to Privacy:

Toronto

B.E.A.T.Barriers to EarlyAssessment &

Treatment