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Posted by on in Ethical, Legal & Social Issues
Grey genomics w/ VCGS Senior Scientist Belinda Chong

The grassy parkland replete with big hill to roll down offered a nostalgic mirage on my way next door to the Royal Childrens Hospital (RCH) on Flemington Road, Melbourne. Running on fumes, I wandered inside - that colossal, veritable wonderland, where for a moment I was 3 feet tall, trying to see what I'd once have seen stumbling into this spaceship with worried parents on route to the doctors. First, leaves and butterflies floating on wire from lofty ceilings, an oceany aquarium of shiny fish, a rainbow coloured lolly shop and deeper still in this labyrinth of childhood delights, the golden arches reared its head. It all roused good feelings, and despite me momentarily struggling with the idea of fast food in a hospital, I felt for the sick kids wanting a happy meal before visiting meerkats - which I decided to save for my next visit. After a brief bite to eat, coffee and some more caffeine, I went next door to the Murdoch Childrens Research Institute, where Belinda Chong - Senior Scientist - met with me for an interview on the Victorian Clinical Genetics Services (VCGS).

So Belinda, how'd you get into genomics?

I think it was more by accident, I was at the right place at the right time kind of thing... While I was at uni, I had no clue what I wanted to do, but I had a huge range of subjects, I knew I was interested in science: chemistry, biochemistry, I had zoology, I had a whole range of different psychology... But the whole genomics thing didn't happen until I was doing my PhD or even post-doc.

Had any other profession caught your eye?

When I was doing my bachelors, and going into masters, I did think about doing nursing, yeah that's completely different again, looking at patients and patient care, but by the time I'd really thought about it I had already started my masters and was nearly completing it.

And what is it that you do at the VCGS?

We do diagnostic testing of inherited disorders, so basically, we get blood samples and we look at DNA, so not fancy stuff with some other chromosomes or anything like that.

So given your experience in diagnostic testing, what do you think about all these newcomer companies popping up and selling tests direct to the consumer without potential harm statements about the tests and without a genetic counsellor to deliver them?

Before all these companies even occurred, we've had calls, can you test for 'everything', and we're thinking at that time - what do you mean 'everything'? - so we do already have people wanting this kind of test, and you almost can't say, if it's available no we can't do it, so as long as they [consumers] are aware that these companies, they're not providing these things and it's probably advisable that you do get all these things provided, if it's not from them, then maybe someone else, have a second person, go to a genetic counsellor, go to another person who understands results and all that, and get all that explained to you, as long as people understand that then it might not be as bad. I know it's not a good way, but because things are already out there and you can't stop it, maybe there's something that can be put in place, someone they can go to, someone they can approach to talk to about what all this means, I think then it won't be as bad.

So we're not quite Gattaca yet! Belinda reassures me that Gattaca does not play on loop in the office but she has seen it and shares with me her main concern about the future of genomics.

It would be great if we could just give a hair sample and we'd get everything. But my biggest concern would be people not being given all the necessary - I can't even say answers - it's not black or white - you can't say 'this is your result, that's it' - cause there's still so much unknown, so it needs to be 'this is a grey result' so it's still not complete, currently, as far as we know this is what it is now, but in 5 years time, it could change.

It could change!? I've heard family history can change the 'grey result' too, but what about families who aren't on the best of terms?

Well then they need to understand, that the result that they're getting may shift, depending on whether you have family members tested or not, so you just need to know, that this is my result and these are the risks, but it could change if I had more information.

But that sounds like the start of a journey and I get the feeling many people might just want the black or white result, and when's that coming and how do I get there?

I don't know whether there will ever be a black or white, I think people need to be realistic in the results they are getting, positive results, yes they may be positive, but they may also be positive for something else and that's impacting on the current thing and then your course of whatever changes. So, I know not many people think that way, and it's hard for people to think or to convince them to think that way, but I suppose that's the hardest thing. Some people do think in black and white and that's it, they don't want to know anything else..

For those who think in black or white, how long do you think before some of those greys become a bit more, you know, black?

It depends on what sort of condition you are looking at and how well known, with Huntington's for example, it's such an old disorder, it's such an old test, a lot is known about it, it's almost black, but there are some exceptions, so again..

But in genomics I've learned a big part of what you know is based on the amount of data you have, which means the more labs that share their data, the more we know, the more black the results, right?

The hardest thing is for people to share, even though there's a huge push, there's still a lot of people not sharing that information.

So who needs to be convinced?

The lab heads, they need to be proactive, so they encourage their staff to enter the data all together, and if there is no encouragement from their boss then there is no push for them to really do so - unless you are so passionate that you would just go and do it..

Read more about the Human Variome Project and the push for labs to share data here.

Interviewee: Senior Scientist Belinda Chong from Victorian Clinical Genetics Services at the Murdoch Childrens Research Institute.

Interviewer: Communications Volunteer Peter Collins from The Human Variome Project

Image 'Splitted Vision' sourced under Creative Commons via Flickr from Danil Kazakov.


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Guest Thursday, 21 October 2021