Risks,concerns,and benefits of molecular HIV Epidemiology in Public Health Practice: A qualitative exploration of perspectives among affected and interested communities

Improved understanding of HIV transmission dynamics or epidemiology

All participant groups described MHE as improving our understanding of HIV transmission dynamics or epidemiology. Participants described this benefit of MHE as enhancing our ability to identify patterns of HIV transmission with greater specificity than standard surveillance approaches both within and across geographic areas, for example, communities/zip codes, rural/urban areas, states, and countries, as well as within and across populations, for example, racial and ethnic groups, age ranges, sexual networks, and hard to reach groups. Some PLWH who received partner services noted how MHE related to their desire for greater information about HIV:

. . . any time, any uptick, any type a new information pertaining to the future of HIV, studyin’ [MHE] or whatever, their ears are always open, their minds are already ready, always ready for this information because it’s always about learning more about the disease that we’re livin’ with (PLWH_1117).

Additionally, because MHE does not rely on individuals’ self-report of sexual partners, this approach was also seen to overcome the limitations of self-reporting contacts, cited as a significant limitation of standard surveillance and field services.

I guess the biggest benefit is to expand the ability to investigate clusters rather than just asking people who their relationships were with or who their encounters were with. This allows validation of that plus potentially to expand it to where it’s not just all word of mouth. (Provider_1205)

However, many public health professionals stressed that MHE would enhance, rather than replace, traditional surveillance practices:

Yeah, I think it’s more added value than advantage over. It’s not like one would switch to molecular surveillance over something else. (Public health professional_1310)

I see it more as a complement to. I wouldn’t say that it is better than existing strategies, but I see it as a complement to what we do, so it adds more information to our understanding of how HIV’s transmitted and groups that may be at risk. (Public health professional_1301)

Of note, some PLWH believed MHE could identify the source of an individual’s HIV infection and perceived this as a benefit. Several PLWH also saw the potential of MHE to provide evidence to support criminal charges against PLWH who intentionally or carelessly transmit the virus to others as a positive, and a way to promote justice and accountability:

I really do think there needs to be a better way to track those who are intentionally [spreading HIV] that so it can be used to be able to take legal action towards them the right way . . . If there was a measure that could be taken where you could use this type of surveillance [MHE] to assist in that process with other protocol set into place, not just that, I would be curious to see the outcome of it. (PLWH _1106)

There are people out here that know that they’re infected, choose not to take their medicine, or play around knowing you can infect someone, then, yes, that information should be used and they should be prosecuted. You should not play with no one’s life. You don’t have the right. Yes, that’s very important. (PLWH_1107)

Identification of HIV transmission ‘hot spots’ or clusters

The ability for MHE to identify hotspots or clusters of HIV transmission was identified as a primary benefit, with some participants noting the speed and timeliness of cluster identification and response as critical aspects. The ability to see and respond to outbreaks in real time was acknowledged as providing a significant advantage over traditional approaches:

I think maybe that’s where molecular surveillance probably helps that traditional partner services can’t with HIV is finding that more current understanding the timing of when transmission may be occurring, whereas when you just have named partners during regular partner services, you don’t know that definitively unless they’re in the acute phase of their disease. (Public health professional_1301)

Several PLWH noted the value to members of groups or communities with a higher burden of HIV of having a better understanding of ‘risky’ areas for HIV infection so that they could take personal protective measures:

I think the benefit truly is the tracking portion of it because there are areas that—even in the gay community, we jokingly, not jokingly talk about as places that are the cesspool of the country where you’re like, “Uh-huh. You wanna be careful when you go to this place.

(PLWH_1103).

Potential to inform focused and efficient interventions

The value of MHE, and especially cluster information, was commonly tied to its ability to inform more focused and efficient use of public health services and resources:

Rather than blanketing the state and doing catch as catch can, let’s deploy a team. . . Essentially like a SWAT team from the state where you can see that there’s transition happening, and focus resources there. I think is a really smart way to stretch limited resources at a state level. To have a very informed and directed approach. (Provider_1207).

I think it’s a good thing because you could better understand where it’s comin’ from, where the most people are getting it. Where your focus and your—as far as givin’ out information and tryin’ to help people, where you could focus your help (PLWH_1116).

This included tailored communication strategies and interventions in areas and with groups most in need, especially benefiting marginalized communities and populations:

It can help focus those efforts within—well, here’s—what do we see in this group? What are those—is that population all the same or what—yeah, I guess you have to take each one of those and figure out, okay, how do we use that information, or what’s the key pieces in there? Yeah, it could help. (Public health professional_1307)

Specific health benefits of targeted activities to prevent HIV transmission were noted along with benefits to PLWH who are linked to or re-engaged in medical care because of the MHE response:

If you find it quickly enough, you can kind of go in, and if it’s a relatively contained area or population, you might be able to go in and test and treat and offer other sort of services to help hopefully stop some transmission in that group. (Public health professional_1301)

Closely tied to these expected benefits, particularly for PLWH and providers, was the framing of MHE as a ‘tool to end the epidemic’ or eradicate HIV:

. . . ‘cause at the end of the day, they want information to see—to process that information, ‘cause they can attack, and they can react, and they can help people at the end of the day (PLWH_1110).

[T]his is our vaccine right here. I don’t need to wait for an injectable vaccine. The knowledge of this kind of work can stop this epidemic in its tracks with access to these kinds of services. Without sounding too much like your cheerleader, this is exactly what I think we need. (Provider_1208)

Personal contribution to HIV prevention efforts

While the above benefits were common across the five participant groups, one unexpected benefit was expressed specifically by PLWH participants related to their contribution to HIV prevention efforts via MHE. When asked how it felt to have personal data used for MHE, several PLWH took an altruistic view, describing positive feelings about their data being used to help prevent HIV infections in others:

If it’s gonna help stop infections, if it’s gonna help in any way where we can fix this problem, then I’m down for it (PLWH_1107).

I feel like it will be really good. I feel like my information could be helpful so that way people won’t be showin’ up HIV positive anymore. I feel like this would be a good way to actually help eradicate HIV (PLWH_1108).

I believe that my information being used in this way would be helpful actually for others. . . I wouldn’t mind because I know I’m helping someone else who may be in the risk of it (PLWH_1101).

However, it is important to note a few also tempered these comments with caveats about privacy and how their data was used (see also ‘risks of MHE’ and ‘balance of risks/benefits’):

Well, as long as they don’t use it for anything against me. I really don’t care if they use it for research, for—as long as it’s for good. The moment that my information is not used—is being used for good, then that’s where it’s concerning. As long as my privacy can get—is protected, I’m fine with it. (PLWH_1110).

Another similarly noted that avoiding intrusiveness was the key to MHE data being beneficial:

I think as long as they find a way for it not to be intrusive in any way. I think that it’ll flourish because information that they need for positive things and being put towards the right study. I think that it’ll make a way for a community to become better when it comes to health and knowledge on how we handle HIV or understanding of it, as well. (PLWH_1112)

Privacy and confidentiality

The core concern among many participants was that personal, HIV-related data about individuals collected through MHE might be shared with or accessed by others in ways that could lead to abuse, exploitation, or other negative consequences.

There’s always the concern of confidentiality. That’s probably the biggest one . . . There’s always that one percent of a chance that something that is disclosed will get out. When that happens, it affects not only the person with HIV. It could affect their family. It could affect their friends. It could affect their career. It’s just, basically, opening a Pandora’s box. (PLWH_1111)

Another PLWH stated that data breaches happen in other domains of life (such as banking) so it is possible that it can happen and is potentially devastating when it happens with health data:

We know that there are breaches out there. When it comes to health, I think it is even more susceptible to – not only to happen, but also more delicate. You just change your bank account number, you just change – what are you going to do? When it comes to your health it’s something very, very delicate. (PLWH_1110)

Overall, trust in current data management practices to adequately protect privacy and confidentiality was generally high. This was most clearly expressed by the public health professionals, who discussed the practices of only sharing and reporting aggregated MHE data, obtaining data sharing agreements approved by ethics committees, and having access controls on MHE datasets. There were nevertheless differences among public health professionals regarding the possibility to reliably deduce the direction of HIV transmission from one individual to another using MHE data. While many stated such deduction was simply impossible, one respondent pointed out:

It’s a concern of mine I have as this evolves. What will it be in the future? Like we say, right now, we can’t tell directionality, but what will it be in the future? Will that be there? Even if we don’t use it, that’s there. Someone has the ability to try to take that. (Public Health Professional_ 1307)

Reluctance to access HIV testing and care

Participants were worried that individuals could be reluctant to be tested for HIV if they were aware of its connection with MHE, and that the integration of clinical and surveillance data could impact negatively on their healthcare-seeking behavior. Some providers and public health professionals were concerned that the surveillance use of clinical data, once discovered, could erode patient trust, particularly among communities of color with histories of maltreatment by medical authorities.

I think anytime anyone says, “That we’re able to identify you using a specimen that you gave us, or some information that you gave us,” that there’s concern because people, particularly people of color, have a really bad history with the healthcare system . . . I don’t think it takes much to concern individuals that maybe the healthcare system doesn’t have their best interests at heart . . . (Public Health Professional_1309)

Relatedly, several PLWH were concerned with the impact that the language of surveillance surrounding MHE might have in their communities. ‘Surveillance’ sounds intimidating and could make PLWH feel as though they are on a watch list:

Like someone is monitoring people that have HIV, like it just sounds almost like people that have HIV would be on some sort of list. If I was just to hear the name, and not have any more information, it sounds as though there is a call-list, kinda like a – I hate to say this, ‘cause it sounds really negative, but kinda like the sex offenders. (PLWH_1103)

However, the views of PLWH regarding the potential impact of MHE on HIV testing and care were complex and nuanced. For some, the impact significantly depended on how MHE was presented to PLWH in personal interactions. Others noted that people were already reluctant to get tested and enter care before the advent of MHE, so the reluctance may be rooted more in HIV-related stigma and/or concerns about privacy.

Stigmatization

Concerns were expressed about MHE potentially leading to the (further) stigmatization of certain groups, especially racial, sexual and gender minorities. If marginalized groups are known to be associated with clusters of increased HIV transmission through MHE, members of those groups could face additional negative consequences in their communities.

I don’t think there’s a way around it [concerns about stigmatization] because in the real world, everyone’s going to think something about someone, so let’s just say the east side of Mecklenburg County is 50 percent of African-American women just HIV or something like that. Then the African-American women would be looked at differently and think they’re the carriers and all this other stuff, and things of that sort. (PLWH_1101)

For this reason, some stated that cluster information, particularly in terms of what areas are experiencing an outbreak, should not be released to the public:

I don’t really feel like it necessarily should be presented as a cluster or an area type of thing. I think it should be used for the researchers or health professionals who are going into areas to help inform, and help with prevention, and help with aid, but I don’t think it should be listed as public knowledge that this particular area has a super high outbreak of HIV, because it does put a stigma on a place. (PLWH_1103).

It’s risky to identify groups as being sort of hotspots of HIV infection . . . This is not theoretical. We ought to take a lot of precautions about this . . . Conclusions that might be released in a press release, for example, really ought to be thought through and with input from the potentially affected communities and with input from stakeholders who understand how these – this type of information will be perceived and used. (Ethicist_1601).

It should be noted that a few PLWH took the view that while MHE could increase stigma, its benefits to ‘at-risk’ groups ultimately justified its use. This sentiment was shared by a few public health professionals, who either argued that stigma had more to do with HIV than with MHE as such or that the benefits associated with MHE could outweigh stigma concerns:

If there’s a cluster of cases in the transgender population, and we can identify that there’s a molecular cluster involved, so it’s not just increasing in individuals who are transgender, I can only see it being helpful to understand the transmission dynamics and to identify individuals who might not be infected yet but are still at risk. I just don’t see stigma being a big enough of an issue not to utilize the benefit we could get from it. (Provider_1309).

Criminalization

Participants from all groups expressed some concern about the potential use of MHE data by law enforcement in jurisdictions where HIV exposure or transmission is criminalized. Many participants believed this punitive use of MHE could have a very negative impact, particularly on HIV testing and care-seeking behavior among PLWH:

I’m just imagining . . . that someone could say, “Well, now you have put someone at risk for HIV, and because that’s criminalized in the state, you are now facing criminal charges.” All I did was try to take care of my health by getting a test and getting into care. That seems not only a horrible disincentive, but just cruel and wrong, to be honest, for a person who’s trying to engage in their care. (Provider_1203)

PLWH had a range of different views about MHE and criminalization, including concerns about those potentially subject to criminal proceedings despite not knowing their status, and the enhanced likelihood of criminalization of MHE data given the current state of relationships between police and communities of color. One participant, however, argued that while criminalization was a risk, the problem was not with MHE as such, but with HIV laws.

However, there were differing views as to how likely criminalization was to occur. Some providers argued that if MHE could not definitively determine directionality of transmission, its utility in a court of law was negligible:

I don’t think it . . . implies 100 percent causality other than allowing information to be used to potentially link cases. It doesn’t say definitively what that interaction was or what the activity was . . . to me, it’s just another tool that links potential – links something potentially that can be investigated, that’s the strength of it, as opposed to implying some sort of wrongful activity if that makes sense. (Provider_1205)

Others believed that there is at least some risk of MHE data being used in this way:

I don’t think it should be used to prosecute people, but I do see that there’s always a chance that it could be used, but I would hope there would be some expert explanation of how to correctly interpret the data. (Public Health Professional_1301)

Community awareness

The lack of community awareness of MHE was a common concern. This included concerns about insufficient public engagement in MHE data collection and use, as well as inadequate dissemination about MHE. As a result, laypersons and even providers were not aware that MHE was occurring or what it involved. One PLWH was saddened that their interview for this study was the first time they had ever heard of MHE:

I am kind of saddened by the fact that this is my first time hearing this information, ‘cause I feel like this is something that more people should be aware of in term of that there are ways to help with more care and to help with more prevention. (PLWH_1103)

The theme of PLWH being surprised by or unaware of the existence of MHE was also expressed by some public health professionals:

I’m always amazed that sometimes I feel like I’ve been in some of these in the past, you feel like you’ve covered this. Then it’s like, all of a sudden, people are surprised. I think it’s just not something everybody – surveillance is oftentimes one of those things nobody wants to know much about [laughter], until they see the numbers, and they go, “Wait, how’d you get this?” (Public health Professional_1303)

Some participants said that lack of public awareness about MHE is part of a broader lack of awareness about (admittedly complex) HIV surveillance practices:

I don’t think people realize or understand the average population – I don’t know that I even understand the public health authority and how that works and what the really means in terms of surveillance. (Public Health Professional_1303)

The public health community has a really strong track record of interventions reducing morbidity and mortality, and most people have no idea how it was done. They have no idea that it was done, let alone how it was done. (Ethicist_1602)

Several participants noted that past or current initiatives to communicate MHE to the public tended to have limited reach. A participant stated that information about MHE generally stayed within HIV organizations rather than reaching out to the broader public:

This community don’t get to hear about [MHE]. That’s what I’m sayin’. I see it bein’ done within the organizations, but there’s no community – I don’t wanna call ‘em forums. I’ll say there no community discussion. Community discussion pertaining to [MHE] from the local health department, I haven’t seen it within the last 5 to 10 years. (PLWH_1117)

One participant observed that while MHE is publicly available on the CDC website, most people are likely unaware of its existence or how to find it:

Although I believe that this information is very transparent on the CDC website. I believe it’s there to let the know that molecular surveillance is ongoing, and this is how we do things, but someone has to find it. I don’t think it is common knowledge that people would know that this program existed unless they look for it. (Public Health Professional_1308)

A key underlying concern with lack of community awareness of MHE was that, once the practice becomes better known, people could lose trust in public health agencies, particularly in communities of color that associate public health agencies with deception and institutionalized racism. There was considerable tension between the view that greater public awareness of MHE would enhance trust, and an opposing view, that transparency would increase mistrust and disincentivize HIV testing.