Autism Genetic Tests

News

***Update*** – Pediatric Bioscience, Inc Filed Notice of Chapter 7 Bankruptcy in June 2016. Website and links provided to their site no longer working.

“Some women in the study who were informed of their antibody status have already decided against having further children.” TIME.com

As discussed in my book Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults, US-based diagnostic testing company Pediatric Bioscience have announced that they are readying a pre-pregnancy diagnostic test for autism (the MAR test) later this year (2015).

On their home page Pediatric Bioscience states that the MAR test can be used as:

“a family planning tool to test women over 35 years of age to help them understand their risk of having a child with this type of autism prior to conception. This test will provide them with valuable information to help them in their decision to proceed with trying to conceive a child.”

As the medical sector often admit that they understand very little about the origins and complexity of autism, it is of some concern that a private bioscience company is preparing a $1,000 test aimed at helping women to decide whether or not to carry a baby pre-disposed to autism genes.

The potential impact of the MAR test on the future autistic population is made clear by an article in TIME.com which highlighted that “Some women in the study who were informed of their antibody status have already decided against having further children.”

The promotion of the test for use on women thinking of getting pregnant to help them decide whether or not they want to carry a potentially autistic baby could be considered a form of ‘genetic selection’ which I, and many autistic advocates are  greatly opposed to.

This page will update every month or so with the latest developments on this test and others like it.

Regards,

Lydia Andal

Timeline & Media Coverage:

June 2016 – Bankruptcy

Pediatric Bioscience, Inc File Notice of Chapter 7 Bankruptcy. It remains to be seen where the assets and scientific developments will be sold or transferred to in the future. Full details here.

November 2015

Launch Delay?

After reviewing the latest developments, it seems Pediatric Bioscience have revised some of the wording on their website. This website will continue to contain extracts from the previously published text outlined on the rest of this page below.

Despite previously published plans to launch the test in Q3 of this year, no test has been launched and it seems the company are awaiting a license to continue clinical trials.

March 2015

Pediatric Bioscience sponsors the 2015 Autism Speaks Investment conference

US organisation Autism Speaks is no friend of the autistic community due to its commitment to finding a ‘cure’ for autism  despite the open letters and protests of autistic people who do not wish to be ‘cured’.

For this reason it is not surprising to see the organisation provide a promotional platform to Pediatric Bioscience who were both sponsors of the conference (photo) and featured on the speaking bill as follows:

“Jan D’Alvise, CEO of Pediatric Bioscience, described how her company’s MAR Test uses a blood sample to identify whether a women has autoantibodies that increase risk that a child will develop autism (Full article here).”

Jan 15 – The Curious Case of the Disappearing ‘Quote’

On 15th Jan 2015 U-T San Diego published the article  ‘Autism blood test nears market’ which covered the new Pediatric Bioscience test.

The original article appeared to carry a quote from  Jan D’Alvise, Pediatric Bioscience president and chief executive referring to this test as a ‘prenatal’ test as shown in the below screenshots (click the screenshots to enlarge):

 

As I have conducted journalistic interviews myself for The New Idealist magazine I know that interviewees who make contentious statements sometimes request to get them retracted afterwards.

Whilst I am not in any way suggesting that is what happened here, I did suspect that this quote wasn’t likely to remain on the site for long and so I took the screenshots.

Indeed, two days later an ‘updated’ version of the story was published which had removed all reference to the quote on prenatal testing and the article had been substantially re-written – without a correction notice being published.

I then contacted the journalist to clarify the following:

“The site advises that your article was ‘updated’ yesterday 17th January and after comparing the screen grabs I took of the original article with the updated version it seems that amongst other things you replaced the original quote by Jan D’Alvise of:

‘If a pregnant women [sic] gets a positive diagnosis, preparations can begin before birth to get the child into therapy if needed’.

With a new quote:

‘Because of this hyperactivity, the test isn’t appropriate for pregnant women, D’Alvise said.'”

The journalist replied and explained the following:

“My original statement was incorrect – it was my extrapolation without confirming it with D’Alvise. The story should have had a correction notice on it. Later, I greatly expanded the story, and had the question of where to place it. My editors decided to place it in the same place as the original story.

I apologize for the confusion I caused.”

Shortly after, I received an email confirming a correction notice had been placed on the article which can be viewed here.

Although the MAR test is based on research conducted on pregnant women (PDF Link) and lead researcher Judy Van de Water seems to have previously discussed the possible use of the test prenatally in an interview with TIME, it has now been made clear Pediatric Bioscience are not investigating the possibility of using this test on pregnant women as a prenatal test.

2013 TIME.com article highlights that some women who have had the MAR test have decided against having more children

Time.com published an article on the MAR test which contained the following reference to use of the test prenatally:

“If and when the test is available, Van de Water says that it probably won’t be used in pregnant women first. Instead, it could become a way to test women before they become pregnant to screen them for this risk of autism. Some women in the study who were informed of their antibody status have already decided against having further children.” Read full article here.

2013 Forbes article suggests Pediatric Bioscience are ‘Cashing in on fears of autism’

Forbes.com published an article entitled “Cashing In On Fears Of Autism: Scientists Claim They Can Predict Whether A Mom Will Have A Child With Autism”, which provided a critical look at the science behind the MAR test as well as examining the financial motivations: “Van de Water and her friends at Pediatric Biosciences seem far more interested in making money off the fears of prospective parents. “ Read  full article here.

2013 Science Journal News Article Critical of the Pediatric Bioscience Test

Science Journal published a news article entitled “Alarm Over Autism Test – A hypothesis that maternal antibodies can impair fetal brains stirred plenty of doubts – and that was before the researchers set out to turn it into a test for predicting autism” Read full article here (by PDF).

Pediatric Bioscience Marketing Materials:

Links not working? It means the articles have been moved or removed – let me know below!

Want to know more?

If you would like to read more on the debate around the introduction of pre-pregnancy/prenatal tests for autism you can read The Autism Issue of The New Idealist for free here or order the book “Am I Autistic? A Guide to Autism & Asperger’s Self-Diagnosis for Adults” here – both explore the potential impact of these tests in some depth.

FREE AMIAUTISTIC.COM NEWSLETTER

Sign up here to register for occasional updates on future editions and notification when relevant autism-related news items or features are added to the site.

Legal Note:

On their information page Pediatric Bioscience states that the MAR Test is an:

“informational test that will determine if an individual has autoantibodies to specific fetal brain proteins.”

Pediatric Bioscience states the test should be used as follows:

“to help rule in an autism diagnosis for a child with developmental delay, or to subtype the form of autism for treatment of a child with autism. Additionally, the test can be used by high risk women before they get pregnant to assess their risk of having a child with ASD.”

In the section ‘Who Should Be Tested’ Pediatric Bioscience states the following:

“The MAR antibody test should be ordered on three types of “at risk” women:

1) Women of child-bearing age who have already had a child with autism, 2) Mothers of young children in need of a diagnosis for their child’s perceived developmental delay, and 3) Women over the age of 35 (who are at least 2 times more likely to give birth to an autistic child). Specifically, women in this group that are considering In Vitro Fertilization (IVF) to become pregnant may want to consider taking the test before they proceed with the procedure.

The MAR test is not intended for pregnant women or women who think that they might be pregnant.”

Click here to view the full explanation for the use of the test on the Pediatric Bioscience site.

Comments Policy

Debate around the development and introduction of genetic tests for autism is welcomed, however this site will not publish comments directly advocating the benefits of prenatal or pre-pregnancy genetic tests which could lead to the termination of autistic babies or the prevention of autistic babies being born.

Updates: This page was updated shortly after publishing on 2nd April 2015 to revise the paragraph around the possible use of the MAR test prenatally and update the timeline with additional article links.

Comments

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s