IEPA 2014: Tokyo, Japan Poster Presentation C CHENG, S NADIN, M KATT, CS DEWA, B MINORE

1. IS PARENTAL CONSENT NECESSARY FOR INFORMED CONSENT FROM MINORS ,
ESPECIALLY IN CANADA’`’’S NORTHERN ABORIGINAL CONTEXT?
BACKGROUND
TO BE OR NOT TO BE?
NorthBEAT is a descriptive study about the mental health service needs of youth
in Northern Ontario. Participants are Aboriginal and non-Aboriginal youth
(≤18 years) who have experienced psychosis, and are being recruited from 10
sites across Northern Ontario, Canada.
Ethical practice compels researchers to obtain informed consent from research
participants. When studying children, researchers are typically required to
obtain parental consent before a minor can participate in research. However,
the NorthBEAT research context presented challenges to the usual practice of
obtaining parental consent, and illuminated this important question:
Are there contexts where obtaining
parental consent is inappropriate?
6% of
Ontario’s
population
~804,000 people
size of France + Germany combined!
80 2, 7 75 k m 2
90% of
Ontario’s
landmass
Acknowledgements: Carole Lem , St. Joseph’`’s Care Group. This project is funded by the Sick Kids Foundation in partnershi p with Canadian Institutes of Health Research (CIHR).
References:
1. Flicker , S; Guta , A. Ethical approaches to adolescent partici pation in sexual health research. Journal of Adolescent Health 2008;42:3-10.
2. Scott , S. (2013). Informed consent of 16-to-18-year old partici pants in evaluation. The Canadian Journal of Program Evaluation , 28(2) , 65-84
3. Hiltz , D; Szigeti , A. A Guide to Consent & Capacity Law in Ontario. 2006/2007 ed. LexisNexis Canada Inc; 2006.
4. Research Ethics Board. Consent and recruitment. 2012. (http://www.sickkids.ca/Research/REB/consent-and-recruitment/index.html).
5. Hein , I.M. , Troost , P.W. , Lindeboom , R. , de Vries , M.C. , Zwaan , M. & Lindauer , R.J. (2012). Assessing children’s competence to consent in research by a standardized tool: a validity study.
BMC Pediatrics , 12. Retrieved from: http://www.biomedcentral.com/1471-2431/12/115. doi: 10.1186/1471-2431-12-115
6. Martenson , E.K. & Fagerskiold , A.M. (2008). A review of children’s decision-making competence in health care. Journal of Clinical Nursing , 17(23) , 3131-3141.
7. Miller , V.A. , Drotar , D. , & Kodish , E. (2004). Children’s competence for assent and consent: a review of empirical findings. Ethics & Behaviour , 14(3) , 255-295. doi:
8. Zayas , L.H. , Cabassa , L.J. , & Perez , M.C. (2005). Capacity-to-consent in psychiatric research: development and preliminary testing of a screening tool. Research on Social Work Practice ,
15(6) , 545-556. doi: 10.1177/1049731505275867
RESULTS
The literature review revealed: i) Discussion around the ethics and
appropriateness of requiring parental consent. 1.2 ii). That there is no legal age
of consent in Ontario; age is simply a proxy for developmental capacity, 3,4 and
that even very young children can have the capacity to provide consent. 5-8
Solution: Capacity Assessment
Informed by the above findings and in consultation with project stakeholders,
a 2-step capacity assessment protocol was developed. The protocol (as passed
by 6 Research Ethics Boards and 4 community agencies and/or Aboriginal
communities) is as follows:
Step 1: Inform only “capable” youth about the project.
Participants are recruited by their mental health clinicians who are instructed to
inform only “capable” clients about the project (i.e., those they deem capable of
understanding the study purpose and procedures).
Step 2: Capacity assessed during consent process.
Through a verbal consent process, the interviewer assesses whether the
youth understands the project and consequences of participating (e.g., “Can
you describe what NorthBEAT is and what I am asking you to do? Do you
understand the consequences of participating?”, etc.).
CONCLUSION
The convention is to require parental consent before a minor can participate
in research. However, that general rule can prove to be impractical, and
more importantly unethical, in some research contexts (e.g., mental health
research in Canada’s Northern Aboriginal context). In some circumstances,
minors can be legally and developmentally capable of providing their own
consent, making the parental consent requirement unnecessary.
The capacity assessment protocol adopted in the NorthBEAT project can offer
a feasible and ethical alternative for researchers facing logistical and ethical
dilemmas about the parental consent requirement.
C. CHENG1,2, 3 S. NADIN1,4 M. KATT4 C.S. DEWA3 B. MINORE4
1 2 3 4
Learn more about
NorthBEAT here:
bit.ly/northbeat
APPROACH
While developing our informed consent protocol, two important challenges
were revealed:
Challenges to Obtaining Parental Consent in the Context of NorthBEAT
1. A vast geography with a sparce population: Northern Ontario occupies
a very large landmass, but is very sparcely populated. Many youth – especially
Aboriginal youth - are separated from their parents because they attend school
outside of their home communities. Mandating parental consent imposed
logistical barriers that threatened to seriously lower recruitment.
2. The right to privacy: Parents don’t always know about their child’s mental
health issues. Requiring parental consent minimizes a minor’s right to protect their
personal health information.
Thus, we had to find an alternative way of obtaining consent from minors in
the NorthBEAT project. To do so, the right-to-consent and capacity-to-consent
literatures were consulted.
YES
YES
MEAPNARSENTAL CONSENT ≠ NECESSARY
WHEN THE YOUTH IS DEEMED CAPABLE.
Download this
poster here:
B.E.A.T. slidesha.re/1zusRjm
Barriers to Early
Assessment &
Treatment