Table 3.

Younger Adult and Older Adult Groups’ Themes Related to Knowledge, Beliefs, and Acceptance of GTT

Theme/Category	Younger Adult Group Themes & Quotes	Older Adult Group Themes & Quotes	Brochure Section
Limited knowledge	• Limited knowledge of GTT • Younger participants were more misinformed (“I heard if you do it you can take the risk of getting what that person had, bi-polar, schizophrenia, anything.").	• Limited knowledge of GTT (“doing the blood test, and they take out certain genes for it and put different genes in.”).	• What is SCD? • What is GTT for SCD? • How Will it Help?
Negative effects of chemotherapy	• Negative feelings about the potential for discomfort related to GTT. • Impression of chemotherapy was shaped by their knowledge of its use in treating cancer, which they associated with negative outcomes (“would you still have the same effects of chemotherapy [when used in GTT] as you would treating cancer?;” “I heard chemotherapy is painful;” “isn’t chemotherapy going to make you sick and lose your hair?”). • Younger participants expressed that potential hair loss was a significant deterrent (“your hair would fall out after one time!”). • Other younger participants expressed this possible side effect would prevent them from opting for GTT.	• Negative feelings about the potential for discomfort related to GTT. • Impression of chemotherapy was shaped by their knowledge of its use in treating cancer, which they associated with negative outcomes.	• Step 3
Fear of HIV	• Averse to the use of the HIV vector as a delivery system for the Hgb F gene and were afraid they might develop HIV (“you were trying to get a treatment for sickle cell and now you got HIV;” “what if they don’t take it [HIV] all out.”). • Younger participants were upset that researchers can dismantle HIV in a lab but not cure terminal conditions (“they know how to make HIV, this is crazy,” “but they can’t cure cancer!;” “make a cure for it [HIV] instead of making it [HIV].”).	• Averse to the use of the HIV vector as a delivery system for the Hgb F gene and were afraid they might develop HIV	• Step 2
Trading SCD for cancer	• The GTT risk of developing cancer made participants feel they would be trading SCD for another chronic disease (“ya’ll want us to get rid of sickle cell to get cancer!;” “I’ve just been through so much, so why would I put that on top of it.”) and the potential risk of cancer was not worth being cured of SCD (“I would rather just take my chances and just take medicine every day;” “I’m cool with my hydroxyurea, I’m already messed up”).	• The GTT risk of developing cancer made participants feel they would be trading SCD for another chronic disease and the potential risk of cancer was not worth being cured of SCD.	• Step 1
Infertility risk too high	• The infertility risk made participants hesitant to accept GTT (“it [GTT] really sounds scary now, not being able to have children.”). • Younger participants also expressed apprehension because having children was important to their families (“my parents are all big on having grandkids.”). • Fertility preservation techniques were “too much.”	• The infertility risk made participants hesitant to accept GTT. • Older participants’ fear regarding the risk of infertility was personal. One participant who stated early in discussion, “I’d like to be one of the first people to try it [GTT],” reconsidered this statement adding, “it [GTT] really sounds scary now, not being able to have children.” • Fertility preservation techniques were “too much.”	Step 3 (side-effect)
Apprehension about GTT	• After learning about GTT younger and older participants were less accepting of GTT (“so you say the FDA hasn’t approved it yet?;” “there has to be a reason why your [hemoglobin] F gene turns off, why would you turn that back on.”). • Younger participants were more skeptical due to risks/side effects, concerns for safety, and lack of human trial data (“the cancer, and HIV, and hair loss, that’s going to make me say no;” “[maybe] if you [researchers] were actually in the clinical stages”).	• Older participants viewed GTT as a progression in SCD treatment (“when we were younger they didn’t offer us any of this;” “[GTT is] amazing” and “gives you hope for the future”) and were altruistically motivated to participate in clinical trials (“it might not be in my lifetime, but if we can help someone else that’s a blessing,” and many participants agreed, “that’s what it’s all about.”).	Title