Jun 25, 2026 · 54 min · 13 segments
As genomic medicine advances, questions around consent, data sharing, ownership and trust are becoming increasingly important. In this episode of *When the Code Speaks*, we are joined by Prof Jantina…
Jantina de VriesGuest
Melissa NelGuest
Erin KinghornHost
Melissa, is there a point? that you find that you've come to in your career when you realized sort of how central ethics can be in this field and how important it is?
And I think being part of the academic fabric and being, for example, in the same institute as Jantina, and kind of immersed in the genomics research and the efforts that were happening and that have happened over the last couple of years has really shown me the kind of breadth of the topic and how important it is to consider Ethics are really throughout the pursuit of your research.
I think from a practical and administrative point of view, the first thing any research has to do before they undertake research is obtain ethics approval.
But really acknowledging that these processes are dynamic, scientific questions change.
what we want to do with data changes and really ethics and consent is an ongoing topic and something we need to be engaging with all the time and really also thinking ahead as to how our field is moving and what is changing and what is going to be needed in the future.
I mean, you don't know what you don't know, right? And so do you find that it's difficult sometimes to sort of predict the future when you're engaging with an ethics platform to sort of think about that?
I mean, in my very short career, the way we do genomic research has changed drastically.
I mean, in the last couple of years, we've seen the introduction of AI, which is helping us immensely with interpretation and making things a lot faster.
And so the requirements of our consent are really needing to tick a lot of boxes.
And so I'm sure Jantina can definitely speak more to this, but one approach is to really say, well, let's try and seek broad consent.
And a lot of that, I suppose it has a link with future proofing in that one isn't entirely sure exactly how things are going to pan out.
And so kind of ensuring that the resources one is creating, because many of these genomic sequencing technologies are expensive and much scientific input and financial input is invested in generating them.
And we want to derive the most benefit from them for the patients and the communities that we're trying to serve.
And so, yeah, I think it's one always has to kind of balance that with current consenting models.
got quite a lot to say about consent, but maybe I can take a step back because I think there's also another question that you're asking, which is why is ethics important in the field of genomics? At least that's what I think I heard you ask as well.
And I think the field of genomics is really interesting for two different reasons.
Melissa, is there a point? that you find that you've come to in your career when you realized sort of how central ethics can be in this field and how important it is?
And I think being part of the academic fabric and being, for example, in the same institute as Jantina, and kind of immersed in the genomics research and the efforts that were happening and that have happened over the last couple of years has really shown me the kind of breadth of the topic and how important it is to consider Ethics are really throughout the pursuit of your research.
I think from a practical and administrative point of view, the first thing any research has to do before they undertake research is obtain ethics approval.
But really acknowledging that these processes are dynamic, scientific questions change.
what we want to do with data changes and really ethics and consent is an ongoing topic and something we need to be engaging with all the time and really also thinking ahead as to how our field is moving and what is changing and what is going to be needed in the future.
I mean, you don't know what you don't know, right? And so do you find that it's difficult sometimes to sort of predict the future when you're engaging with an ethics platform to sort of think about that?
I mean, in my very short career, the way we do genomic research has changed drastically.
I mean, in the last couple of years, we've seen the introduction of AI, which is helping us immensely with interpretation and making things a lot faster.
And so the requirements of our consent are really needing to tick a lot of boxes.
And so I'm sure Jantina can definitely speak more to this, but one approach is to really say, well, let's try and seek broad consent.
And a lot of that, I suppose it has a link with future proofing in that one isn't entirely sure exactly how things are going to pan out.
And so kind of ensuring that the resources one is creating, because many of these genomic sequencing technologies are expensive and much scientific input and financial input is invested in generating them.
And we want to derive the most benefit from them for the patients and the communities that we're trying to serve.
And so, yeah, I think it's one always has to kind of balance that with current consenting models.
got quite a lot to say about consent, but maybe I can take a step back because I think there's also another question that you're asking, which is why is ethics important in the field of genomics? At least that's what I think I heard you ask as well.
And I think the field of genomics is really interesting for two different reasons.
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