Table 2. Perceived Risks of HIV Cure Research from People Living with HIV (PLWHIV), n = 12, United States (2015–2016).

Themes	Quotations
Clinical or Medical Risks	“My risk is more personal. Am I going to get into a cure study were my HIV could go ballistic on me and possibly wipe me out. So for me, it’s more personal but there are definite risks out there”
	“Any stem cell transplant research may have some risks or cancer drugs like the HDACs and shock and kill drugs may have some side effects”
Resistance to ARVs	“For me, the biggest risk is… I am going to look at the potential for shortening my own life. I have very young children so this matters to me. If something were really risky and I became resistant to medication… there is a nervousness about that”
Cancer	“Cancer, irreversible cellular damage and untreatable medical consequences as a result of the study”
Risks Related to Procedures	“Any type of surgical procedures or quite painful testing. [I am] too old for additional surgeries”
	“Just mainly the side effects from all the procedures”
Pain	“Procedures that are painful such as biopsy”
	“Physical pain”
	“I would need detailed explanation of all invasive procedures, including those that may be painful”
	“Would prefer to have pain kept to a minimum. If bone marrow/spinal taps are regular operations, I prefer to be under anesthesia (completely unconscious). I do have a needle phobia that has gotten better with time and number of blood draws, but [I] do not like to look at needles”
Permanent or Irreversible Harms	“Toxicities and long term side effects”
	“Permanent damage to my organs or health”
	“Fear of being damaged (…) discourage me from biopsies”
Debilitation or Death	“Risk of life or debilitation”
	“Possibility of death”
	“If I know that I will die from doing this, because I want to live a longer life just like everyone”
	“Other than my death, I cannot imagine any potential risk that would discourage me from helping find a cure for HIV”
Scientific Uncertainty	“How does it work, what can go wrong and what can go right? What is my risk exposure? Basically, the more I understand, the more I'm ok with it. The more that is unknown or fuzzy, the less comfortable I'd be”
Social Risks	“There are risks to some people socially. (…) Sometimes when I travel and someone sits down on a plane. And the first thing people ask you is “what do you do for a living” and I say that I am a patient advocate and this opens a whole can of worms as far as my hemophilia and HIV and the whole nine yards”
Poor Treatment by Research Staff	“Clinical staff that [who] take my time for granted. I have been HIV+ since 1988. Many staff assume [that] you do not work nor have a career.”
Transmitting HIV to Others	“I would never put my husband at risk. He takes Truvada as a pre-prophylactic. We use condoms every time and I have an undetectable viral load and am very compliant with taking all medications”
	“Passing it to someone else”
Disclosure (or breach of confidentiality)	“If it becomes obvious to the outside world that I have HIV/AIDS then it would be a challenge. I am discreet in whom I tell”
	“Fear that personal info won't be protected properly and could fall into hands that use the information for nefarious reasons”
	“HIPAA not being adhered to”
Unwanted Media Attention	“Media attention”
	“Publicity of my status”
	“Inappropriate media coverage or publication that reveals private or identifiable information”
Identity Risks	“22 years is a long time and I went back to school after learning that I was HIV positive. My identity is connected to have HIV. (…) I never thought about a cure changing who I am”
	“Have thought a lot about "losing my HIV+ identity". It is complex, ya know?”
Losing Employment	“Any risk of losing my career or the risk of infecting others would be a total discouragement to participate”
	“I am at the end of my working career (less than 4 years [left]), and would not want to experience side-effects that would compromise my ability to work”
Losing Access to Loved Ones	“If I had to stay at a clinic for more than one overnight stay without seeing my fiancé. . . As long as we have access to each other be it FaceTime or in person on a daily basis I am good”
Stigma	“[Fear of] stigma”
Financial Risks	“There are some risks–including ability to maintain disability insurance. If you [have] been on disability for several years, then the insurance companies can say you have to go back to work. For me, it would be difficult to go back to work. There is the financial risk”
	“There is of course financial risk. There is the risk versus reward. It does take time out of your life”