TABLE 7.

“when a researcher contacts people about being in a new study, should she generally offer them their individual genetic research results from the first study or not?”

Response	Theme	Examples
Should offer	Explain purpose of recontact	I think people have a right to know, if they’re going to participate in a new study, why. (Epilepsy-D04)
	Inform participation decision	I think they should. I think that makes a person more wanting to do the research if it’s something they found. Otherwise it puts them in the dark, “Why am I doing this again?” (Autism, AGRE-S07)
	Educate/empower patients	I think any time you have an opportunity to educate a person about CF, particularly if they have it, you should try to do so. I just think that we, in order to be independent and for survival … I like to know what’s going on with my body and, you know, what my results are. (CF-C01)
	Medical/personal benefit	I just think it’s important for people to know. I mean for me … if there’s gonna be a new drug to market or something that’s gonna be beneficial, to me that’s something that I’d want to know. (CF-C13) It’s interesting and it would help to kind of clarify things a little bit for me. I mean, I don’t know why I have epilepsy. I can’t really tie it to anything in particular, so for me it would be great to be able to go, “Oh … it’s all so clear now.” (Epilepsy-D19)
	Reciprocity	Yeah, ’cause that’s their blood. They have a right to know what’s going on. If I sat down and … willingly gave somebody some of my blood for a test, I think I should get it back. I should know the grade of my test since I took it. (Epilepsy-D09)
Should not offer	Undue worry, distress	The science is too new I think… I don’t know that it might—it might cause more worry than necessary. (Biobank-C08) It depends on whether it’s bad or could be interpreted as bad. It’s hard to say. You have to be careful about handing out information to people, especially genetic stuff ’cause these days it’s the hot topic and “Oh they know this about my DNA,” and “What does it mean? What does it mean?” I think it’s probably best to not say. (Epilepsy-D16)
Uncertain	Unsure	I don’t know. I’m not really sure on that one. I guess you could go either way because … if everyone wants to know how their results turned out, you know, that could be costly and not really … time effective and all that. (Diabetes-S19)
Other	It depends	I would say—well, only if it falls into that “I really know for sure this matters in your life” category. I think only if there’s concrete knowledge that you can work with should you tell people. Because this is like you know false positives on tests. All it does is freak people out for no reason. And people waste their lives and all their energy and effort chasing something that’s not real and is stupid. (Biobank-C09) It depends on whether or not the participant agrees to that up front and whether the researcher discloses that up front. (Biobank-C20)