One Success in Research Ethics

Research ethics committees often behave unethically*. One example is their failure to understand the ethical basis for obtaining consent and the appropriate limitations. There is a simple rule – “get consent”. I discuss this in greater detail in Bioethics: Why Philosophy Is Essential to Progress, JME 40th Anniversary Issue.

But ethics is more complicated than this. It involves the weighing of different ethical reasons. Sometimes, those reasons can speak overall in favour of not obtaining consent in the way prescribed by various ethical guidelines. Deliberation is required. It is import to also consider the value of good research.

I was Chair of the Department of Human Services Victoria Ethics Committee between 1998-2002, I tried to improve various aspects of research review. You often don’t know if anything you do has any beneficial effect. But recently, Pam Snow came up to me after a lecture. I couldn’t remember her but she kindly told me her story. Here it is. I am relating it as a case study in how “deliberative” research ethics review can actually do some good. I asked her to put her thoughts in writing to show how ethicists can work with researchers to find a way to bring about a good outcome.

Dear Julian

It was nice to meet you this evening.

As per our chat, I wanted to acknowledge the very significant contribution you made in the early days of our research into the oral language skills of young people in the youth justice system.

By way of context, I’m qualified in both speech pathology and psychology, and back in the late 1990s was working in a child and adolescent mental health research role with a focus on drug and alcohol misuse. I had occasion to be thinking about “high risk” young people, and in considering the role of academic achievement/failure in this context, began to be interested in the contribution of expressive and receptive oral language skills, given that the transition to literacy draws heavily on a child’s underlying oral language skills. Obviously young offenders as a group typically do not successfully make the transition to literacy and so depart school early, with all the associated risks. For this reason, we wanted to examine the possible contribution that undiagnosed language disorders make to early academic disengagement in young people with other risks (dare, I say, after tonight’s presentation) of a bio-psycho-social nature.

My first challenge was to get a foot in the door with youth justice to gain access to a research sample. Happily this proved easier than I had expected, as I was fortunate to make contact with a regional manager you “got it” and was keen to support the first study. When I mentioned that my university ethics committee would require parent/guardian consent, however, her response was “well you can forget the study then”. Her argument (very reasonable and logical) was that many young people in youth justice have relationships with parents that are somewhere between non-existent and plain damaging. As you would realise, many young people enter youth justice via child protection, so this makes sense. I discussed this issue with the university ethics chair and was emphatically told that because this was “high risk” research (by virtue of it involving young offenders), and because the participants were, by definition, minors, I would indeed need parent/guardian consent.

I rang around to some academic ethics colleagues for some advice, and someone (whose name now escapes me) suggested that I speak to you, in your role as DHS Ethics Chair. To be honest, my unstated assumption was that DHS would be even more hard-line on this than the university and it hadn’t occurred to me that this would be productive. I recall a very reasonable conversation with you, in which you asked about the nature of the study (administering standardised measures of language skills) and associated risks (minimal) and you suggested that we should engage with youth justice key workers and ask them to act in loci parentis with respect to ensuring that the young person understood the ethics documents and the fact that participation was voluntary etc. The Youth Justice manager I was dealing with was delighted with this compromise and wrote a letter in support for the university ethics committee (as of course did you). Happily the university ethics committee ultimately accepted this compromise and the research proceeded.

We are now completing our 5th youth justice study and have clearly identified young offenders as a group that is high risk for unidentified language impairments (present in about 50%, in both community and custodial settings). We’ve also shown an association between language impairments and more complex patterns of offending and have written a lot about implications for restorative justice conferencing (a very verbal process), forensic interviewing, and counselling. A pilot cluster RCT focussing on improving teacher practices re language and literacy in early years classrooms in disadvantaged communities showed positive results, and an ARC Linkage-funded project is now taking that work to scale across 87 disadvantaged schools in Victoria. For the first time, we have a youth justice centre in Australia (Parkville in Melbourne) employing a Speech Pathologist – and moves are afoot to increase staffing there over time. Some of our papers are routinely used by youth justice sectors in training and induction packages for new staff, and we’re also in the process of conducting an intervention study in a custodial setting in NSW. I’m regularly asked to address justice and welfare audiences about this work and have also given a number of invited presentations to judicial colleges around Australia. Next week, I’m addressing the National Juvenile Defenders’ Summit in the USA, as a USA law professor at Madison has shown a real interest in this research and its implications for how young people are processed through the justice system.

So – I like to think that we’re having some modest impact, but am quite certain that this body of work would not have seen the light of day had we accepted the mandatory parental/guardian consent ruling that was initially applied. As I mentioned, the fact that we got that initial waiver has meant that successive ethics committees (university and justice) have followed suit. In 15 years, and 350+ young people, we’ve had no ethical incidents. Ironically, the degree of hidden impairment experienced by this group would have remained hidden had this not occurred – a far bigger ethical travesty I would think, than assessing young people’s language skills without their parents’ knowledge or consent.

For the record, here’s the key publications that have come out of this work:

Hayes, H. & Snow, P.  (2013). Oral language competence and restorative justice processes: Refining preparation and the measurement of conference outcomes. Trends & Issues in Crime and Criminal Justice, 463, 1-7.

Humber, E. & Snow, P.C. (2001). The oral language skills of young offenders: A pilot investigation. Psychiatry, Psychology and Law, 8(1), 1-11.

Law, J., Reilly, S. & Snow, P.C. (2013). Child speech, language and communication need re-examined in a public health context: A new direction for the speech and language therapy profession. International Journal of Language and Communication Disorders, 48(5) 486-496.

Snow, P. & Powell, M. (2004). Interviewing juvenile offenders: The importance of oral language competence. Current Issues in Criminal Justice,16(2), 220-225.

Snow, P.C. & Powell, M.B. (2004). Developmental language disorders and adolescent risk: A public-health advocacy role for speech pathologists?International Journal of Speech Language Pathology, 6(4), 221-229.

Snow, P.C. & Powell, M.B. (2005). What’s the story? An exploration of narrative language abilities in male juvenile offenders. Psychology, Crime andLaw, 11(3) 239-253.

Snow, P.C. & Powell, M.B. (2008). Oral language competence, social skills, and high risk boys: What are juvenile offenders trying to tell us? Children and Society, 22, 16-28.

Snow, P.C. (2009). Child maltreatment, mental health and oral language competence: Inviting Speech Language Pathology to the prevention table.International Journal of Speech Language Pathology, 11(12), 95-103.

Snow, P. C., Sanger, D.D. & Bryan, K. (2011). Listening to adolescents with speech, language and communication needs who are in contact with the youth justice system. In S. Roulstone, & S. McLeod, (Eds).  Listening to children and young people with speech, language and communication needs (pp. 111-120)London: J&R Press.

Snow, P.C. (2009). Oral language competence and equity of access to education and health. In K. Bryan (Ed) Communication in Healthcare. Interdisciplinary Communication Studies Volume 1 (Series Editor: Colin B. Grant), (pp 101-134)Bern: Peter Lang European Academic Publishers.

Snow, P.C. & Sanger, D.D. (2011). Restorative justice conferencing and the youth offender: Exploring the role of oral language competence.International Journal of Language and Communication Disorders, 46(3), 324-333.

Snow, P., Powell, M., 2011, Oral language competence in incarcerated young offenders: Links with offending severity, International Journal of Speech-Language Pathology 13(6), 480-489.

Snow, P.C. & Powell, M.B. (2011). Youth (In)justice: Oral language competence in early life and risk for engagement in antisocial behaviour in adolescence. Trends & Issues in Crime and Criminal Justice, 435, 1-6.

Snow, P.C., Powell, M.B. & Sanger, D.D. (2012). Oral language competence, young speakers and the law. (Invited manuscript) Language, Speech & Hearing Services in Schools, 43, 496-506.

Snow, P.C. (2013). Restorative Justice Conferencing, language competence, and young offenders: Are these high-risk conversations? (Invited manuscript) Prevention Researcher, 20(1), 18-20.

Snow, P. (2013) Language competence: A hidden disability in antisocial behaviour. InPsych, June, 16-17. 

Snow, P.C., Eadie, P.A., Connell, J., Andersen, B., McCusker, H.J., & Munro, J.K. (2014). Oral language supports early literacy: A pilot cluster randomized trial in disadvantaged schools. International Journal of Speech Language Pathology, 16(5), 495-506.

Snow, P.C., Sanger, D.D., Caire, L. & Eadie, P. & Dinslage, T. (2014). Improving communication outcomes for young offenders: A proposed Response to Intervention framework. International Journal of Language and Communication Disorders, Released early online July 2014.

Apologies that this is a bit more than a couple of paragraphs, but hopefully it covers the bases – please let me know if not.

Kind regards

Pam

Pamela Snow, PhD, FSPAA, MAPS

Associate Professor

Department of Psychiatry &  School of Rural Health, Bendigo

Monash University

PO Box 666

Bendigo, 3552

AUSTRALIA

+61 3 5440 9006|F +61 3 5440 9001|M 0458 377 253

pamela.snow@monash.edu

http://www.monash.edu.au/research/profiles/profile.html?sid=3672&pid=3478

Google Scholar: http://scholar.google.com.au/citations?user=Ii9hY5EAAAAJ&hl=en&oi=ao

Blog: http://pamelasnow.blogspot.com.au/

Twitter: @pamelasnow2

—-

* Savulescu, J., Chalmers, I., and Blunt, J. (1996). ‘Are Research Ethics Committees Behaving Unethically?  Some Suggestions for Improving Performance and Accountability’. British Medical Journal.  313: 1390-3.

  • Facebook
  • Twitter
  • Reddit

Comments are closed.

Authors

Subscribe Via Email

Affiliations