HREC Minutes 2017

Anne McDonald Centre
Human Research Ethics Committee

Minutes

of the first meeting of the Committee
held on Wednesday 29 March, 2017 at 4.00 PM
at 538 Dandenong Road, Malvern 3162

Note: For further background on matters raised in these minutes, members are referred to the National Health and Medical Research Council National Statement on Ethical Conduct in Human Research[1]

Present: Rhonda Galbally, A.O (in the Chair), Jan Ashford, Chris Borthwick, Lex Borthwick, Jill Johnson, Ross Johnson, Phil Lipshut, Julie Philips, and Rosemary Ryall. 

 

1. Apologies

Apologies were received from Sarah Barton, Amanda Ducrou, Philip Graves, and Howard Langmead.

 

2. Introductions

Members briefly introduced themselves to the meeting. 

Members were asked to supply brief CVs to the secretary for submission to the NH&MRC.

Members agreed that a list of the email contact details of members should be circulated to the Committee.

 

3. Election of Secretary

Chris Borthwick was elected Secretary of the Committee.

 

4. Disclosure of conflicts of interest

Several members declared possible conflicts of interest (see attached Register of Conflict of Interests)

 

5. Report on Assessment Research Project#1 (see attached)

The National Statement having said that

A review body (HREC or other) may invite researcher/s, and researchers may request, to be present for discussion of their proposed research.

Emeritus Professor Douglas Biklen and Dr. Rosemary Crossley, A.M. presented a report on the project for which they were seeking research approval from the Committee.

The Committee considered the application for research approval for the project, accompanied by the following papers:

  1. Crossley R., 2016, Demonstrating Competence – Appropriate Cognitive Assessments for People with Little or No Speech, In Focus, 42:2, 12-15 (see attached)
  2. Anne McDonald Centre; Assessments for people with little or no speech Information Statement (see attached), as provided to parents of potentially participating children
  3. Anne McDonald Centre; Assessments for people with little or no speech Consent Form for Children (see attached), as provided to parents of potentially participating children

The researchers showed videos of several assessment sessions to illustrate the nature of the proposed research activity. The researchers clarified the Committee’s concerns on the following issues:

Merit

The Committee asked whether other research supported the project’s approach.  Researchers referred the Committee to a number of publications:

  • Dawson M, Soulières I, Gernsbacher AM, Mottron L. The level and nature of autistic intelligence. Psychol Sci. 2007;18:657–62
  • Bölte S, Dziobek I, Poustka F. Brief report: the level and nature of autistic intelligence revisited. J Autism Dev Disord. 2009;39:678–82.
  • Nader, AM., Courchesne, V., Dawson, M. et al. Does WISC-IV Underestimate the Intelligence of Autistic Children? J Autism Dev Disord (2016) 46: 1582
  • Courchesne VMeilleur AAPoulin-Lord MPDawson MSoulières I, Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment. Mol Autism. 2015 Mar 6;6:12

The present project would extend and deepen previous work, and could potentially contribute to greater acceptance of children with little or no speech in the mainstream educational system.

The Committee noted that researchers propose altering some test protocols to meet the needs of this population.  In particular, instructions for the Peabody call for assessors to refrain from telling participants whether their choices are right or wrong. Researchers believe that this would be both disrespectful and anti-educational, and do not comply, correcting wrong answers after the answers are recorded, as is ordinary practice in therapy sessions.  The children are used to this in therapy sessions and show no distress.  As no child does the test more than once scores cannot be affected.

Researchers report that these modifications will be specified in later journal publication, along with any positioning procedures (for example students will be permitted to point to their selections only after it has been determined that they have visually perused the choices and only after the assessment question has been asked).

Researchers specified the criteria for selection of subjects for this research as all school-age children who

  • Presented to the Centre in the project timelines
  • Have little or no speech
  • Have ASD diagnosis
  • Have demonstrated the ability to choose meaningfully between 4 or more items, including pictures
  • Have been previously assigned a status of IQ<50 by IQ test or in school history

 

Justice

The Committee noted that the research might lead to considerable upheaval in the disability educational system, and agreed that this did not constitute a reason to refrain. The potential benefits outweigh the risk.

 

Beneficence

The Committee asked whether any harm could be caused to participants in the project.  It was noted that the assessment project would cease if the subject became agitated, though it might be recommenced if the subject later calmed. It was noted that, as specified on the circulated consent form, parents may withdraw their children from participation at any time.  One potential subject, for example, predictably will be prevented from completing a full assessment due to longstanding uncontrollable epilepsy.

It was noted that all participants will have been clients of the Centre for between several years and several visits.

It was noted that when children are successful in demonstrating greater abilities than previously assessed through IQ and other such assessments that require speech and/or independent writing skills, access to more challenging educational programs will be indicated.

It was noted that should a child do badly on their assessment there should be strategies in place for dealing with any distress that might cause. 

It was noted that some children will need to be restrained at points in the assessment project, by having their dominant hand gently held away from the test booklet until the question had been asked and they had scanned the test plates. Researchers clarified that some children are restrained to counteract impulsivity, to ensure that they do not touch the plates without looking or before hearing the question and that this restraint is no greater than that required in normal education, therapy, and training practices with this population. The Committee agreed that this level of support is acceptable for the project with this population

 

Respect for others

The researchers report that consent will invariably be sought from the parents of children being assessed.  Where the person being assessed is over the age of 18 their consent was required.  The mode of consent is noted in the individual’s file.

The consent form and attached information about the project have been circulated to the Committee.

 

Funding Sources

The researchers reported to the Committee that funding for the project has been sought from the Pratt Foundation and the Lord Mayor’s Charitable Foundation, and further funding will be sought from other philanthropic bodies.

 

Consideration of Assessment Research Project

The Committee noted that Chapters 4.3. (People in dependent or unequal relationships) and Chapter 4.5 (People with a cognitive impairment, an intellectual disability, or a mental illness) might apply to the research project under consideration, and that a higher degree of scrutiny would therefore be appropriate.

Each member of the Committee present stated that, in his or her judgement, the proposal as submitted to the review body meets the requirements of the National Statement and is ethically acceptable.

It was agreed that the Committee would meet again in approximately a year unless any changes to the procedures as approved by the Committee necessitated an earlier date or if additional research proposals are offered.

The meeting closed at 5.50 pm. 

Anne McDonald Centre. 538 Dandenong Road, Caulfield 3162 Victoria, Australia Ph: 03 9509 6324, Fax: 03 9509 6321
 
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