Table 2.

Individual Focus and Collective Focus

	Measure	Illustrative Quote(s)
INDIVIDUAL FOCUS	Dynamic consent	“[E]veryone should be empowered to…remove their data if they want or change the status of consent…because if you don’t feel you’re in control you’re not willing to share, you lose interest.” (P11)
	Information push to individuals	“I think at least people should know that their medical data is going to be used for research and is going to be shared, maybe used for research and maybe widely shared. By ‘know,’ I mean something more than one sentence at page 17 of a single-spaced consent form. I think they should get some information back, both crucial personally-relevant information like the ACMG-56 [now ACMG-59], but also information about the research. What have we got? Who’s using this and what do they do? … [A] regular email newsletter or something that says: ‘You may remember you are part of the Medical Information Commons and here’s what we’ve been up to lately.’” (P7)
	Individuals contribute information	“[H]aving the patients fill out some of their phenotypic information is very powerful” (P34) “[S] ome editorial or input function” (P17) “The amount of data that’s going to be generated that’s relevant to our health that is generated outside of the healthcare system will massively [exceed] information within the healthcare system.We begin to aggregate that all in our personal cloud, 50 terabytes and $50….We will not only have control over it virtually but we will have more control over it physically as well.” (P11)
	Opportunities to access and engage in citizen science	“I think they should be able to have access to information that’s collected about them. As far as larger roles, maybe it might be nice to think about some of these conversations that have been taking place in the citizen science space and thinking about how they might be able to contribute ideas about what can be done with the research or maybe they have a section of the portal that people can look at or browse, though de-identified.” (P18) But: “I think it’s a very bad idea to give consumers the right to query these research databases…because they won’t have the knowledge or the expertise to interpret the results.” (P26)
COLLECTIVE FOCUS	Leadership in governance	“I think participant leadership is important in the governance structure, and I think that’s the way…to the extent that we’re concerned about questions of autonomy, it seems to me that’s the way to realize the autonomy principle, more in a collective way than in an individual way.” (P2) “The reason for ongoing interaction is, it’s not just is this study okay, should the data access committee let this research have this particular set of data, but it’s what is our research, how do we want these data to be used, in what ways can they be used to help solve the problems that we care about.” (P5; emphasis added) “We need some other system where…the people whose data are involved can have a decision-making structure that lets them say, ‘Yeah, we’re going to contribute our data, and we’re going to govern its use, and we will have a way to get benefits from doing so.’ You need an institutional arrangement…that will let people have a say and let them make decisions that will then bind the group, and that’s, I think, the place things have been hanging up is that…we’re very uncomfortable in our ethical frameworks with ultimately binding people to a collective decision.” (P22)
	Inclusion of perspectives	“I think it would be nice, it would be an aspirational goal to have some kind of representation…At the very least focus groups, if not participation in oversight and governance committees…where there would be actual research participants who are involved in a discussion of how the data is being used and actually a real-time kind of oversight.” (P19)
	Comprehensive involvement	“I think that they should be involved in all aspects of the commons. They should be involved in establishing it, setting it up. They should have some role in the oversight and governance and monitoring of it. I think they should have access to the data if they want to do their own research. I think they should be involved in disseminating the data and helping interpret data or research or results. I think they should be able to individually download their own data and take it with them to their provider’s office or for their own use if that’s what they so choose to share with their faith healer or the medicine man or woman or give it to their Rabbi. I think they should be able to do whatever they want to with it.” (P24)