Monday, May 21, 2007

Autism Research Ethics - Is It Ethical to Deny ABA to Autistic Infants for Research Purposes?

The AP is reporting several new autism research projects aimed at studying early clues of autism and other disorders. One such study mentioned is by Dr. Stanley Greenspan which, according to the AP report, will involve two groups of infants - One group will receive intensive behavior training, the other will not; both will be compared through age 5. But is it ethical to deny ABA intervention to infants who are diagnosed or suspected to have an Autism Spectrum Disorder for research purposes?

An opinion peace in the Medical Journal of Australia Children with autism deserve evidence-based intervention The evidence for behavioural therapy MJA Vol 178 5 May 2003 424, Jennifer J Couper Head, Endocrinology and Diabetes Centre, Women's and Children's Hospital, North Adelaide, and University of Adelaide, SA and Amanda J Sampson Ultrasonologist Royal Women’s Hospital, Carlton, VIC reviewed the impressive body of research that existed in 2003 in support of the effectiveness of ABA as an autism treatment. The authors noted "that while ineffective therapies may be harmless, they waste parents’ money and the child’s valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child’s outcome.".

Since the MJA editorial piece there have been more studies confirming the efficacy of ABA as an autism intervention or treatment. How can a study which denies ABA treatment to autistic infants during the critical 2-5 year age period meet ethical standards in light of ABA's demonstrated evidence based effectiveness in treating autism? As Couper and Sampson noted ineffective therapies waste parents' money and valuable therapy time. Hopefully, at the very least the parents of infants in the control group, the infants not receiving ABA, have been informed that there are literally hundreds of studies demonstrating the effectiveness of ABA as an autism intervention. Hopefully they will have been told before agreeing to deny ABA treatment to their children that state, academic and professional bodies around the world have consistently concluded that ABA stands alone as the most solidly supported, evidence based treatment for autism to this day.


Associated Press
Article Launched: 05/21/2007 01:31:53 AM PDT


Research on identifying early clues of autism and other disorders and testing treatments is booming. Here are some of the doctors and researchers involved:

Dr. Fred Volkmar at Yale University is studying potential ways to diagnose autism in the first months of life, including whether looking at objects rather than people is a sign. "I think we're on the verge of being able to do a much better job" of diagnosing autism in infancy, Volkmar said.

Researcher Stephen Porges at the University of Illinois at Chicago is starting a five-year study of whether excessive crying past 6 months of age might be an early sign of autism, attention deficit or other behavioral problems.

Dr. Stanley Greenspan, a psychiatry professor at George Washington University, is launching a multimillion-dollar study involving parents and babies at risk for autism or attention deficit disorder. One group will receive intensive behavior training, the other will not; both will be compared through age 5.


Freddie L Sirmans, Sr. said...

Just browsing the internet, very interesting.

Anonymous said...

Hi Harold,

It would be hard to argue that with holding effective intervention can be ethical... IBT has some pretty good supporting literature (more would be better though) so I wonder if there would be a better way to look for a comparision group...

Do you know how assignment to groups will be conducted? Do they intend to use random assignment tables or if the parents will be allowed to elect "treatment" protocol/groups... which will introduce a confounding variable but might respect parent wishes and values.


Angela Mouzakitis, PhD BCBA-D said...

I would argue that it is not ethical to not provide a treatment that has support for effectiveness. There are methodological concern however if trials are not randomized. For example, if allowed to choose the method, there may be certain characteristics that parents who are not "drawn" to a behavioral model may have. In that way, we would not be able to identify if it was the family or the intervention that was the source of positive behavior change in the child.

From a research perspective, this is a way to truly identify ABA as the more effective treatment or not. Studies that have been conducted to date exploring ABA as the most effective treatment (Lovaas, for example, whose study has not been replicated and has several methodological flaws)need additional support.

But again, it is easy to talk about the design, challenging to address the ethical component. That being said, I would not have my child in the other treatment, nor would I EVER advocate another child be placed into the non-ABA treatment in the interest of science. That speaks to something.

David Hunter said...

There isn't enough information given here to truly assess the ethics of this research project. If your characterisation (That this project involves denying effective treatment to children who are diagnosed with Autism) is correct then you are absolutely right this research project would be unethical.

However there are two issues with the case you make.
Firstly the relevant distinction here is that these infants have not, as far as I can tell, been diagnosed with Autism, they have been indicated to be "at risk" but not diagnosed. There is good evidence for using ABA with children diagnosed with Autism, less for those who are thought to be at risk. Thus this research project one would guess.

Secondly you might be concerned that during the 5 year projects some of the children in the control group become diagnosed with Autism rather than simply at risk. In this case you could be worried that these children would still be denied ABA. I would be stunned if this is the case, medical trials usually have criteria to determine when someone will be exited from the research. These criteria usually involved the development of relevant conditions and the need for treatment.

However I recommend if you are still concerned you contact the researcher to query, most researchers are very happy to answer questions about their projects.

David Hunter
Lecturer in bioethics
University of Ulster
Northern Ireland