Table 2 Qualitative feedback: resource content and volume (as per Kirkpatrick “Reaction” element).
Category | Sub-category | Illustrative Quotesa | ||
|---|---|---|---|---|
Content quality | Expected content | Was present | “[…] I was expecting to see a Genomics 101 [module] and […] something about return of results and I did. And then I was expecting to see ELSI explained to me. And then I was a hundred percent expecting to see reviewing a genomics application.” Lana* (research member & genomics expert) (quote 1) | |
Was not present | “I was expecting it to be divided into germline, somatic, circulating tumour, like that, those sorts of different things. Um, because they’ve got implications for the ethical issues. And I felt like that was not really teased out in it. Like I felt like a lot of it focused on germline, which makes sense. But you do need to make it clear […].” Mindy* (research member & genomics expert) (quote 2) “[It] says […] this technology is low risk and this technology is high risk, but I actually didn’t know what [it] meant by risk at all.” Melanie* (research member, genomics experience) (quote 3) | |||
Had no expectations | “I just came in knowing that I just knew so little about it, so I didn’t really know what I didn’t know.” Bridget (counsellor/allied health member, no genomics experience) (quote 4) | |||
Ease of readability | Compatible with current level of understanding | “[…] it was a really good level for people who are naive because I understood it and I have nothing more than your basic, you know, year 12 science […] I thought it would be scarier and it wasn’t.” Stella* (research member, no genomics experience) (quote 5) | ||
Not compatible with current level of understanding | “I was a little bit confused in some of the technologies […] I don’t feel like I’ve got a full understanding still. So I think I needed a little bit more info there.” Melanie* (research member, genomics experience) (quote 6) | |||
Topics covered | Appropriate | “[…]what I wanted to know specifically was addressed in the last lesson. Um, but now that I’ve done the course, I needed all the previous lessons to fully understand that one.” Elisa* (research member, no genomics experience) (quote 7) | ||
Less interested or less relevant | “I think as a lay person, I just need to understand the risk more than, than how it works.” Lesley* (lawyer, no genomics experience) (quote 8) | |||
Positive feedback on content | General content feedback | “I was very appreciative of this course because I think I didn’t fully understand the ethical implications from the tests and the differences between them. And yeah, to be told explicitly is just wonderful. I really enjoyed that.” Elisa* (research member, no genomics experience) (quote 9) | ||
Figures and tables | “Love the checklist. Honestly, I think that’s such a helpful part of it […]” Elisa* (research member, no genomics experience) (quote 10) | |||
Videos | “[…] one of the really good elements of all the five modules was that […] introductory five to seven minute video” Isaac* (lay member, no genomics experience) (quote 11) “It was good how you had [patient] the whole way through because it did make it, um, sort of engaging and [good for] following along.” Stella* (research member, no genomics experience) (quote 12) | |||
Content quantity | Contained right amount of content | “I think the volume was good. I think, um, any less then you wouldn’t be able to like brush [up] on important topics and any more it would become quite a big task then for people. I think that it, you’ve sat in the Goldilocks zone quite comfortably there.” Stacey* (genomics expert) (quote 13) | ||
Appropriate amount of time to spend going through resource | “I think one to two hours is a reasonable amount of time.” Bill* (research member & genetics expert) (quote 14) | |||
Recommendations | Add or expand content | Familial and community risk | “[…] there’s a, a big focus on individual risk. But there’s also, and it is addressed later in the module, but less clearly I suppose, is the potential risk to familial and community […] especially when considering minority communities or First Nations communities […].” Stacey* (genomics expert) (quote 15) | |
Research considerations for diverse populations | “But with your community, with your ethnic group, with like lots of different areas. Um, and so there are group harms that come from that. […] researchers need to have a plan for dealing with and should be reflected in the ethics application. […] In Australia, you really need to have a specific mention of Aboriginal and Torres Strait Islander concerns. […] those same principles apply for everyone, but there’s other underrepresented groups in genomics, so lots of migrant communities.” Mindy* (research member & genomics expert) (quote 16) | |||
Data storage and secondary access to data | “[…] how this data will be stored, where, who’s gonna have access to it long term, whether this will be stored on a cloud, how secure is the cloud, whether it’s gonna be stored on a hard drive […] I don’t think there was a lot of comments on that.” Stacey* (genomics expert) (quote 17) “ […] we should be highlighting in the HREA consent question about the type of consent being requested, whether it’s specific, extended or unspecified, because it obviously pertains to the future use of the data.” Rita* (lay member, no genomics experience) (quote 18) | |||
Genomics Technologies ELSI Summary Table | “ [with regards to the risk summary table, are there] risks of the technology being wrong, risks of the technology identifying incidental findings, risks of the technology, all the different risks. […] I think in some ways I would like to see it unpacked.” Sherri* (genomics expert) (quote 19) | |||
Optional additional resources | [pertaining to Genomics 101 module]” I found myself diving into Google to answer questions that I had […]I would’ve preferred more […] but I can’t say that that would necessarily be the case with all HREC members. And maybe there’s a […] compromise to be drawn there in perhaps being able to lead people off to more information should they find that they would like it.” Rita* (lay member, no genomics experience) (quote 20) | |||
More direction for reviewing genomics applications | “I did wonder whether with the checklist there could be also hints. So, you know, if the checklist says […] check for this or look, look for this, what is the optimum? What, what are we looking for?” Margo* (research member, genomics experience) (quote 21) | |||
Plain English | “I was thinking [what] would be helpful would be a glossary that you could refer to […] there’s quite a lot of acronyms and some of the acronyms are ones that mean different things to me clinically.” Bridget* (counsellor/allied health member, no genomics experience) (quote 22) | |||
Accessibility | “It’s not terribly accessible at the moment. […] your captions, your transcripts, your ways in, um, your contrasts, those kinds of things.” Sherri* (genomics expert) (quote 23) | |||
