Table 2.

Participants’ perspectives about the logistics of genomic data storage and sharing.

	Illustrative quotes
Length of data storage	“…if genomic data is going to be stored for a lot of people, potentially on cloud servers, that would have huge environmental impacts because imagine your data is lying on a server for some decades, and electricity is going to be used to keep your data on those servers for a long time…so with current conditions it might have a high carbon footprint because we are still relying on fossil fuels to make electricity…” [FG1 P3]
	“Look, the researcher side of me says collect it all and store it all and use it for as long as you possibly can because, I mean, it’s a bit of a no-brainer, the more of that you have and the longer it’s available for, the more powerful and more useful it can be.” [FG3 P1]
Location of data storage	“…the centralisation of storage of these things brings with it a whole lot of potential benefits as well for that sort of advancement of science in terms of having it all in one place and enabling the linkage of different datasets…” [FG2 P6]
	“I just think that if they weren’t stored centrally and they were stored in each research facility, it would be, something like a breach of privacy may more likely be occurring in that sort of area because…each organisation is different, maybe the way they store the data may be different as well…” [FG5 P4]
	“…if you’re talking about something that is a physical storage device then you’ve got less of a chance of hacking or that information being accidentally shared, but when you’re talking about something that’s stored in some kind of internet space, that does open up a can of worms for things like viruses and other technological issues.” [FG2 P3]
	“…from a storage and cost perspective, it would be interesting to consider individuals being given the option to, you know, ‘we can’t afford to store your data currently but do you want to take your data and we can then put you on a list of people where if someone wants to access that, they can contact you?’ I mean, obviously, yes, it’s a big file, but if everyone’s only got their own file, then that significantly eases the burden of storing it. Makes it hard to access, but when the alternative’s potentially deleting it entirely, it would be an option.” [FG3 P4]
Payment and cost of storage	“I’m assuming from a financial point of view, [institutes are] keeping it because it’s worth something. Are they going to sell it? Is this going to be a business?…I’m thinking of it as a commodity value.” [FG5 P3]
	“…once you give your consent for [your data] to be stored, can people buy it? Are you kind of taken out of the equation of who you consent to have and share the information with? Is money part of that? Can people buy it from the company that’s storing it?” [FG4 P1]
	“I think realistically, the financial side of things, at the end of the day is probably going to fall back to a government level…if you’re talking about medical research institutes or universities as being the custodians of the data, in order to do that they would need to get funding, and realistically they’re going to be funded by the government, so the flow on effect is essentially, that’s where it’s going to come from.” [FG3 P1]
	“I think a lot of people would be open to the option of even paying a fee to have their data stored, like a once-off fee…I think if you personally want your data stored then you should pay something towards that because obviously it is an expensive process…but at the same time, a lot of people can’t afford this sort of thing so there should be some kind of concession available or according to the circumstances too.” [FG2 P3]
	“…you’d get buy-in from your big pharma type places…It might be a really practical way of getting the money to make it happen, but then that’s got to be offset with the trust and what the end goals of storing it all really are.” [FG3 P1]
Type of data stored	“…if there were clinical information attached to [the genomic data], that would be more relevant for the research that they could do. It expands the field and if people would give consent for that, I mean, there would be more progress.” [FG4 P2]
	“I think with big pharma and research, I think the information needs to be deidentified and then it’s safe, it’s not connected to someone, it’s just used as, ‘this is the information, we don’t know who it is’. When it’s for health reasons, then it should be identified.” [FG4 P4]
	“If you’re going to have the full clinical dataset where it’s got absolutely everything, then I think you’re going to need to have tighter controls about who has access and how access is approved and whatever else, whereas if it’s more limited, sure, you can’t do as much with it, but then it could, realistically, be made more available to more people.” [FG3 P1]
International data sharing	“In our situation it’s such a rare disease that it would have to be [an international] database, only because there’s like, for example, there’s only three genetic cases that we know of in Australia of anyone that’s got her disease so you’re not going to get much research done with three cases.” [FG1 P5]
	“I do think [sharing data internationally] would need to be done very carefully because not everywhere is as careful with data as our system might be…” [FG3 P4]
	“…it doesn’t necessarily matter what country the information is being shared with, it’s more who in that country is the information being shared with. And yeah, what regulations they have in place, what, how they store it, how they use it…” [FG4 P1]