Story from Australian Genomics Research Highlights

July 2019.

Genomics researchers are navigating new and challenging issues.

What happens when the technological breakthroughs underpinning genomics research collide with sometimes wildly different healthcare systems, limited financial resources, differing attitudes to DNA testing, and growing community concerns over data privacy?

A dizzying array of legal and ethical questions arise.

It’s a really complex area, full of all sorts of jargon,” says Professor Ainsley Newson, of the University of Sydney and Australian Genomics’ ethics lead. “With an area like genomics research, which involves huge consortia and international collaborations, it can be hard to keep afloat among all of these developments.”

But it’s worth doing so, particularly if the alternatives involve doing nothing, or reflexively deleting research data.

What we don’t want to do is realise in hindsight that it would have been really useful to have this data, but we didn’t keep any of it because we didn’t know how to store and use it well.”

Based at the University’s School of Public Health, Dr Newson and fellow academic Norah Grewal, are exploring the various ethical and legal issues raised in genomic healthcare, particularly those to do with the storage and transfer of patient genomic data.

As members of Australian Genomics, they also act as a sounding board for the healthcare professionals and clinicians who deal with these issues every day at work.

The wonderful thing for us as researchers is having access to the coalface,” Dr Newson says. “It’s giving us an absolutely unprecedented insight into the very practical, real-time challenges that scientists and clinicians face as they attempt to implement this novel technology.”

For one project, the researchers are investigating how genomic test results – DNA and its associated data – can move around the country. The question, as Ms Grewal puts it: “What, essentially, can people or entities who hold genomic data do with it?”

The answer is complicated. There’s currently no specific legislation that governs how genomic data is shared. Instead, Dr Newson explains: “We have to take legal instruments that were designed for a slightly different purpose, and see how they fit.”

It may be complex, but they don’t think that passing specific genomic legislation is necessarily the best approach to regulation, either. In an area with such rapid technological change, lawmakers risk constantly playing catch-up.

What you don’t want to end up with is a legislative regime that’s no longer fit for purpose, that doesn’t actually fit the state of the science,” Dr Newson says.

Instead of classes of information or types of data to regulate, she suggests thinking about “situations where data might be used, as opposed to how you’re getting that data in the first place”.

Part of their research covers information privacy, often known as data protection. “Data protection regulations are consent-centred,” Ms Grewal says. “So part of the research involves weighing up the pros and cons of that kind of regulation.”

One way to engage with the challenges of consent-centred regulation is dynamic consent – an online portal that allows participants in research to be selective about how their data, including genomic data, are used.

Still, Ms Grewal explains: “There should be more recognition that some people are happy to share quite freely for specific purposes, like medical research, and want to be protected more thoroughly for other things. It’s an outcomes-based approach.”

Yet, as is the case with many aspects of this project, the outcomes-based concept is not as simple as it first appears. What if you consent to giving your data to university researchers and not to a for profit company, say, but then the latter ends up partnering with the researchers?

“Consent is not the magical answer to everything,” Dr Newson says. “It’s a concept that has been used ad infinitum, and risks becoming an empty vessel, devoid of any meaning.”

Adds Ms Grewal: “This demonstrates how complicated … thinking about the law is when it comes to data sharing. There are so many areas that apply.”

Part of their work involves conducting interviews with the professionals who handle and share the data from day to day. It’s a deliberate effort to escape the ivory tower. “We’re trying to get a sense of what people think the road blocks are,” Ms Grewal says.

When it comes to the ethical questions, Dr Newson asks: “What sort of trade-offs should we be willing to accept when it comes to privacy of data? Should individuals be willing to part with some of their privacy in exchange for the benefits that genomic data sharing and data pooling would bring?”

They’re big questions with no definitive answers. But that’s no reason not to ask them. “If you’re a scientist or a clinician, or somebody who’s in charge of interpreting genomic reports, you want to make sure that you’re using this information to make your patients’ lives better,” Dr Newson says.

You want to make sure that you’re using this information in a way that upholds public trust in what you’re doing.”

Image: Professor Ainsley Newson (left) and researcher Norah Grewal are untangling complex legal and ethical issues.

This story is taken from Australian Genomics’ magazine of research highlights “Our story is your story too.” 

Head over to our digital edition to read more about how our clinical flagships and program areas are transforming the way we think about and approach the integration of genomics into mainstream healthcare.

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