Focus Group Discussants
One hundred individuals participated in 10 focus groups. In summary, discussants were predominantly female (73%), African-American (76%), between the ages of 40 and 49 years (36%), and had some college education but no degree (26%) (O’Daniel and Haga, in press).
Responses to Research Vignettes
Three hypothetical vignettes were discussed to illustrate the various ways researchers may share and disseminate data. Following each vignette, discussants were asked to consider the scenario and the data-sharing practices and whether they would participate in a similar type of study if approached. In general, discussants did not express concerns regarding dissemination of research findings through traditional methods such as scientific publication and/or meeting presentation. Significant concerns were raised, however, about being able to link research data back to personal information or identity. This worry about loss of privacy and/or confidentiality appeared to be linked to several factors including the perceived security of the data storage and the ability to link the research data back to the individual through codes or other means.
Several discussants seemed to be especially skeptical of the security of an open, government database as described in Vignette 2. While some of the concerns were linked to the prospect of open-access, many voiced significant misgivings about the integrity of a government entity to protect the privacy of their data and the lack of trust.
‘Well, I believe that if a government official wanted my DNA, that they would break that code and get it … So, for me, it's a trust issue.’ (focus group (FG) 2, female)
‘It's just something about that word, “government,” because there were other studies in the past on the African American population. And I probably would not [participate].’ (FG 2, female)
‘That did concern me … that it's, you know a government internet … and the world, you know, can have access to it. But if they really did separate it from, you know, the data, away, then maybe.’ (FG 3, female)
‘Well, I don't know what they are going to do with my DNA. [The study] could be a fluke. You going to get my stuff and then there's paranoia, I got the FBI looking for me for something.’ (FG 6, male)
‘As long as I knew that my sample was going to be coded and not in any way traced back to me, I would feel comfortable. If I didn't know that, I feel uncomfortable … I'm sorry, but I don't trust the powers that be.’ (FG 8, male)
For some, a coded link to personal information raised worry about potential harm of third-party access to data, particularly discrimination.
‘… well, they could trace my information back to me. I would want to know if someone disclosed that.’ (FG 1, female)
‘Because if you release your [information], and you don't mind someone sharing your information, it could go to the insurance companies, your rates could go up.’ (FG 8, female)
Support for Data-Sharing
Despite potential concerns, many discussants recognized the benefits of data-sharing and stated scientific data-sharing would not affect their decision to participate in a study.
‘It wouldn't bother me, because, for one, I know scientists aren't really, you know, looking for personal stuff. They're not – they don't care about what the name is. They want the bottom-line raw numbers.’ (FG 3, female)
‘Oh, I think that's the important thing that they ought to share. That's the purpose of it.’ (FG 4, female)
‘I don't think it would affect my decision one way or the other, because it would be based on various other factors. I don't think that would enter into it. As several people have said, the more widely this information is [shared] the better.’ (FG 8, male)
‘Peer review is so important in science, [for] the credibility for the study …’. (FG 4, male)
Discussants were not able to identify circumstances when research data should not be shared within the scientific community, though some sought assurance that it would be anonymous.
‘As long as it's not violating our privacy, if we're doing codes and all that other stuff, that other guy's not going to know who we are. If they receive our full names and are publicizing [them], that's another story.’ (FG 7, female)
However, some also acknowledged situations when access to research data should be restricted.
‘I really don't think the drug company or – somebody who has a – who can stand to benefit from the results the way it's presented. I don't think that should be allowed. I mean, especially if it's presented as scientific information.’ (FG 4, female)
Informing Research Participants about Data-Sharing Methods
Although many expressed that the data-sharing method would have little effect on their decision to participate in a study, the vast majority of discussants believed researchers should disclose it before they consented to participate in the study. In particular, discussants believed they should be informed about how research participants’ confidentiality would be protected.
‘So, you know, you can make an informed choice.’ (FG 3, female)
‘I think however they plan to [share the data] – they should inform so that you know what they are doing, and [where] it's going to go – any method that they use.’ (FG 6, female)
‘You could just put [it] like in the consent form “This may or may not be published; this may or may not be …” – the uses, not like [a] promise.’ (FG 9, male)
Discussants also raised the possibility that they would come across a media report of a study in which they were a participant but were unaware the study findings would be publicly announced. One of the discussants expressed concern about her unawareness of secondary uses of her data, however, it is highly unlikely that she would come to know which studies her data were used in if they were publicly available, highlighting some confusion about the harms of data-sharing.
‘Because you know, you suppose – okay, they didn't tell you, and all of a sudden you go to the library or something, and this magazine, and you say, oh, researchers have found – have discovered this and that and that, so who knows, you might be part of that study, you know? But they didn't tell you that they were sharing it.’ (FG 8, female)
To further explore the impact of data-sharing via online databases on decisions to participate in a research study, we administered a short anonymous survey at the conclusion of the focus group. Ninety-nine of the 100 participants completed the survey. The majority of discussants indicated that they would be very/somewhat likely to participate in a genomic research study if the data were to be shared through a restricted online database (84%). This was significantly greater than those who indicated that they would participate in a study in which data were to be shared through an open online database (52%; p < 0.00001).