The Ethics Center forum: "Analysis of HIV networks: Can we protect both public health and confidentiality?" is Wednesday, August 4, at 5:30 p.m., at the Reuben H. Fleet Science Center in Balboa Park.
MAUREEN CAVANAUGH (Host): Research into HIV/AIDS is taking scientists into some fascinating and complex realms of discovery. It is also posing delicate ethical questions for both doctors and public health workers. Techniques have been developed to identify related strains of the virus and even, to see a pattern traced back to a particular group or individual, and that opens up a world of challenging issues involving personal privacy and public responsibility. As part of our monthly series on ethics in science and technology, we’ll discuss how researchers are balancing these two important concerns. I’d like to introduce my guests. Mike Kalichman is co-director of the Center for Ethics in Science and Technology. And, Mike, welcome to These Days again.
MIKE KALICHMAN (Co-Director, Center for Ethics in Science and Technology): Good morning. Good morning.
CAVANAUGH: And Dr. Susan Little is professor of medicine at UC San Diego and the Antiviral Research Center, and good morning, Dr. Little.
DR. SUSAN LITTLE (Professor of Medicine, University of California San Diego): Good morning.
CAVANAUGH: Now we invite our listeners to join the conversation. Do you think health workers have a responsibility to identify and intervene with a person or group spreading HIV? Or do you think researchers have a responsibility to respect that person’s confidentiality? Call us with your questions and your comments. The number is 1-888-895-5727, that’s 1-888-895-KPBS. Dr. Little, let’s begin, if we may, with a little background on how widespread HIV is in San Diego County. Is there a spike in cases or are the numbers holding steady in our county?
DR. LITTLE: Well, perhaps I can start with a little bit of national data first.
CAVANAUGH: Sure, yeah.
DR. LITTLE: Nationally, there are estimated to be just over a million people living with HIV in the United States. I think of greatest concern about one in five, 21% of those people, are unaware of their HIV infection status. And those 20% of people give rise to about 50% of all new HIV infections in the United States. Some of the other areas of concern have been that among certain risk groups, specifically men who have sex with men, the risk group of men who have sex with men, the number of new infections has actually been growing steadily since about 1990. So the number of new infections among that risk group has been steadily increasing despite our active risk reduction messages and prevention efforts.
CAVANAUGH: Do we know why?
DR. LITTLE: Not particularly, no. I think there’s been a big – a concern that risk fatigue, people now believe that there’s effective anti-retroviral therapy, so there’s not as much concern about becoming HIV infected. A lot of younger individuals are now becoming infected. They have not, to be blunt, seen their friends die of HIV infections so they’re young, they’re optimistic, they believe that they can simply take treatment if they become infected.
CAVANAUGH: Besides the gay community, men having sex with men, what are the most vulnerable groups for contracting HIV?
DR. LITTLE: Nationally, the people of color. Nationally, black individuals represent about 45% of those who are HIV infected, and Hispanics 17%. In San Diego, the numbers are a bit different. Men who have sex with men represents 75% of all new infections. Men are overwhelmingly the number of new infections at 90%. And among men, there’s less of a predominance among men of color. 61% of all new infections are among white individuals, 25% among Hispanics and 11% among blacks. But, still, I think there is a significant concern both nationally and locally that people of color are disproportionately affected by HIV infection.
CAVANAUGH: And, as you say, there are groups who are at risk for this disease who perhaps don’t realize it.
DR. LITTLE: Yes. Again, about 20% of those who are infected nationally and presumably also in San Diego who are infected and are unaware and, thus, are continuing their risk behavior and are not availing themself of both health care and prevention opportunities that are available simply because they do not know that they are infected. Only about 40% of people in this country have ever been tested for HIV infection, about 10% in the last year. So one of the big healthcare efforts promotions is to try and get people simply to test because a big prevention opportunity is simply to test and know your status. If you know your status, you can then take advantage of prevention opportunities, again, simply by knowing you’re negative to prevent acquiring HIV infection or knowing that you’re positive by trying to prevent transmitting to others.
CAVANAUGH: Michael Kalichman, from a public health standpoint, how important in priority is preventing the spread of HIV?
KALICHMAN: Well, I wouldn’t want to speak to the numbers directly because that’s not my area of expertise but speaking more generally from an ethics perspective, it’s crucial. I mean, what we’ve seen is an epidemic that was terrifying in the 1980s. The belief that we had dealt with that epidemic by new therapies has allowed it to increase again. And the possibilities of increased resistance to the therapies means that the therapies we thought were working aren’t always going to work and people not being aware of that means as we see these increases, more and more people become infected, the virus evolves rapidly and we can have a resurgence of an epidemic that was so terrifying in the past.
CAVANAUGH: Now that we’ve got some of the background down, the focus of our discussion here, Dr. Little, is about the research that you’re doing and that other researchers are doing which traces HIV transmission. What are you learning about the virus by following its patterns of transmission?
DR. LITTLE: What we’re learning is that because HIV evolves so rapidly genetically within each individual, the sequence, the viral sequence, is essentially unique within every infected individual, thus we can actually look at HIV sequences and identify that individuals within a community are part of the same HIV transmission network or are not part of the same transmission network. So what we’re hoping to be able to do is to be able to look at HIV sequences and determine whether individuals are part of the same risk group, transmission risk group, or not, and then to target prevention strategies much more effectively within those risk groups.
CAVANAUGH: Now when you talk about a transmission network, do you – are you saying that all the cases in this network, as you say, come from a related source?
DR. LITTLE: Yes. Yes. So – And it doesn’t necessarily mean one source. What I mean is that all the people in that transmission risk group are infected by a strain of a – a closely related strain of the same virus, that genetically it looks almost identical but much more similar than viral strains in the surrounding community that infect people that are part of the same risk group but not same risk network. So, for instance, men who have sex with men who are in a transmission risk network may be infected by the same genetic variant of HIV but not all men who have sex with men are infected by the same variant of HIV.
CAVANAUGH: We are talking about very technical…
DR. LITTLE: Umm-hmm.
CAVANAUGH: …scientific matters right now but basically at the heart of our discussion is an ethics dilemma and that is whether it devolves personal privacy as opposed to public responsibility when it comes to the idea of intervening with perhaps a person or group of people who are common sources of HIV infection. We’re taking your calls at 1-888-895-5727, that’s 1-888-895-KPBS. My guests are Mike Kalichman and Dr. Susan Little. Back to you, Dr. Little. What is the purpose of trying to identify these networks of transmission?
DR. LITTLE: I think, at the heart, the most important goal of these sorts of studies is to try and target prevention dollars, resources, more effectively. People – We simply, in the absence of a vaccine, need every effort – need to take advantage of every effort to identify those who are at risk of transmitting and those who are at risk of becoming infected more effectively to take advantage of the opportunity to use our prevention dollars more effectively in those groups of individuals rather than using prevention dollars broadly across the community.
CAVANAUGH: Now, Mike Kalichman, didn’t researchers begin tracking related groups of HIV transmission in epidemiological studies at the start of this epidemic? I remember tracing back to patient zero and that sort of thing. What makes this different?
KALICHMAN: Well, first, you’re absolutely right. In the past, there were ways, demographically, epidemiologically. By talking to people you could figure out something about the logical path of transmission. What’s different here and what fascinated me when Susan Little approached me about this project is that there is a hidden piece of information that is now available that scientists weren’t aware of in the past but now they can see and which certainly the perspective research subjects or patients who are part of these studies wouldn’t have been aware of. And what’s there is that simply by having a sample of the virus from an individual patient, you can learn something about their relatedness to others who have slightly different versions of the virus. And that’s something that is, as you said just a few minutes ago, is complex. It’s not easy to communicate to somebody. We can do more now than we could in the past and communicating that effectively is the first big challenge here so that somebody who participates in the study knows what might be learned from their participation.
CAVANAUGH: Okay, so these are the blood – the groups that you’re studying have basically volunteered to be part of a research study and they have volunteered to give you samples of their blood so that you can do these – this tracing of the virus. Can the methods that you’re using, let’s say, suggest that one person infected another person?
DR. LITTLE: At the present time, the methods that we use do – cannot reliably determine that one person infected another person. What the methods can tell us is simply that those two individuals or group of individuals are part of the same transmission network, and that is where the methodology is limited. So we cannot tell that person A infected B or that B infected A, the direction of transmission, only that people are infected with a like strain of virus.
CAVANAUGH: However, is that where the research is headed?
DR. LITTLE: Probably, yes. In all likelihood, somewhere down the line, and I can’t tell whether that’s one year or five, the – it is in all likelihood going to be possible to determine direction of transmission based on the rate of evolution of the virus.
CAVANAUGH: Now how, considering the research as it stands right now, so that nobody can necessarily be identified as a source…
DR. LITTLE: Umm-hmm.
CAVANAUGH: …but you can identify a cluster of people who have a common source…
DR. LITTLE: Umm-hmm.
CAVANAUGH: …how can that information be used constructively?
DR. LITTLE: Right now, I think that that information can be used very constructively to try and, again, help those individuals who know that they are infected seek health care, prevention interventions, and those prevention interventions may vary depending on the type of transmission risk network. I think it would be very important to help individuals who are HIV negative in that transmission risk network. We need to remember that within these, what I call, transmission risk networks, there are still people who are HIV negative so if we could identify, for instance, a group of individuals who are infected by the same similar – same or similar strain of HIV that were associated with a cluster, a venue, there may be people who are still HIV negative in that cluster of individuals and they are at very high risk of becoming HIV infected. So – But basically within that cluster of individuals who are HIV infected by a similar strain of HIV, they are at very high risk of onward transmission, of continuing to transmit HIV and would, I hope, be an opportunity to receive prevention interventions, whether that would be antiretroviral therapy, condoms, needle exchange, whatever the intervention might be, some sort of prevention intervention to try and limit onward transmission from within that transmission cluster.
CAVANAUGH: And, Michael Kalichman, I would imagine that not only is your ethics forum going to study how this information is already being used but the big question that it opens up is when the research gets to the point where an individual can be identified as the source of a virus for a cluster group then where does – where do we go with that information? How do we use that information?
KALICHMAN: Exactly, and even though we can’t necessarily say that a particular individual has infected a particular other individual directly, with more and more information, we will be able to say more and more about that. And, you know, so if we take all of this complex conversation and reduce it to the – to who should care and why, there are two groups here that might care about this. One group is those people who are not yet infected. And for them, there’s a high public health priority on looking for ways to intervene with the right groups at the right time to decrease risks of infection. And there might also be a desire for that group that isn’t infected to know that a particular individual is responsible for many infections. So from that perspective, it’s an easy answer. You say we want to take all the information we have and make it available as quickly as possible. But those individuals who are already infected are another group who might look at this slightly differently. If I’m told that I’m giving a blood sample for research purposes then how is that sample going to be used and what can be learned about me that I didn’t know could be learned? And how might that be used? That balance is, I think, one of the most fascinating ethical questions about this kind of research. We need – We can see the advantages to both sides’ arguments but in between is how do we do this best?
CAVANAUGH: You know, we have to take a short break. When we return, we will continue this discussion and take your calls at 1-888-895-5727. You’re listening to These Days on KPBS.
CAVANAUGH: I'm Maureen Cavanaugh. You're listening to These Days on KPBS, and we’ve been talking about research techniques that have been developed to identify related strains of HIV and even see a pattern traced back to a particular group. At this month’s Ethics Center Forum the question is: Can we protect both public health and confidentiality? My guests are Dr. Susan Little. She’s professor of medicine at UCSD and the Antiviral Research Center. And Mike Kalichman is co-director of the Center for Ethics in Science and Technology. We are taking your questions and your comments about this dilemma at 1-888-895-5727, that’s 1-888-895-KPBS. Mike, how has the privacy of HIV/AIDS patients typically been handled by the medical community?
KALICHMAN: Well, I’m not a member of the medical community but from what I understand that that’s – the level of privacy is as high as it can be. I mean, it’s basically – there is an expectation for all kinds of medical care to keep information highly confidential and so information is not typically going to be passed on to others. But because of the risks of infection and the public profile of this kind of disease, I think that there are circumstances where you might see that barrier of confidentiality breached. And Susan was just sharing with me this morning some of the examples of lawsuits around infection with HIV, and I think some of those expectations of privacy might get breached because of a discovery that somebody may have intentionally or unintentionally infected someone else with a highly resistant strain of HIV.
CAVANAUGH: As I say, we’re taking your calls and questions and comments at 1-888-895-5727. David is calling us from North Park, and good morning, David. Welcome to These Days.
DAVID (Caller, North Park): Hi. Good morning. Glad to be with you.
CAVANAUGH: Yes, thank you.
DAVID: I have a question about testing people for HIV. I understand in some places in the country doctors routinely test all patients for HIV, although in San Diego if you want an HIV test, you have to specifically go either to a specific clinic or you have to ask your doctor specifically to get that test. And my question for the guests is, is there something that we can do in San Diego to maybe change that trend so doctors routinely ask their clients to – so they routinely have their clients opt in for the test rather than, you know, wait until the client wants testing.
CAVANAUGH: David, thank you. I know that we did a story recently about a move to make that, you know, the default position, that you get an HIV test the way you would get just any normal test when you go to a doctor.
DR. LITTLE: Yeah, since 2006, routine opt-out testing, meaning you get an HIV test as part of your general medical care unless you decline testing has been part of the CDC guidelines nationally, so the only reason that those guidelines have not been widely embraced in San Diego, in the state of California, has probably been cost. There is no – It is frequently referred to as an unfunded mandate. That is to say, it’s a widely endorsed and supported healthcare policy but there is simply not funding to support that level of testing throughout the state of California. And, certainly, within the city and county of San Diego, our HIV counseling and testing fund has been sharply cut by the state in the last year. So I would widely support, as I’m sure almost every provider in the city would, HIV testing as part of routine healthcare for everyone but I think it’s more an issue of finance than an issue of will.
CAVANAUGH: Now, Dr. Little, as a research scientist, how important is it for you to be able to guarantee confidentiality to the people who want to participate in a research program that you’re carrying out?
DR. LITTLE: I think it’s absolutely critical. I think that if participants are not absolutely convinced that their confidentiality is going to be paramount, that it’s going to be maintained, they are not likely to want to be part of a clinical trial or health care in general. I think HIV has been a very stigmatized disease since the beginning of the epidemic and so I think there are special concerns related to HIV that need to be respected and adhered to. But I think there are policies and procedures in place with regard to many public healthcare programs that are related to some of the issues that we’ve been discussing, the investigation, if you will, of HIV transmission networks that have been developed through evaluation of other communicable diseases like tuberculosis and syphilis. So I think we have a wealth of information and experience in terms of how to preserve people’s personal health information, confidentiality, while doing these sorts of studies both in a research environment and a more global general healthcare environment through our experiences, first with HIV but then also with tracking of partners through tuberculosis and syphilis studies.
CAVANAUGH: How far does that confidentiality go, though? Are there limits?
DR. LITTLE: I think there are always limits in the sense that our goal is that the confidentiality should always be absolute but I think there is always a balance between trying to preserve personal privacy and confidentiality between perhaps what could be gained by knowledge in the public health but by the potential benefit of these sorts of results in the public health study of this sort of data. So, for instance, if we were to learn about the outbreak of a drug-resistant transmission within a venue, for instance, in San Diego, balancing that sort of knowledge of information within the public healthcare system compared to the release of personal healthcare information, that sort of balance is always a little bit—a lot—challenging. And then I think there are always challenges between doing partner notification for any communicable disease when an individual wants to notify a partner confidentially and if that partner, person A, let’s call them, has a partner B. If partner B is notified and A only has one partner, it is possible that B is going to figure out that A is, in fact, the person that notified the Public Health Department.
CAVANAUGH: I see.
DR. LITTLE: So there are limits to confidentiality even when all of the rules are followed.
CAVANAUGH: Let’s take a call. We are taking your calls at 1-888-895-5727. Robert is calling us from San Diego. Good morning, and welcome to These Days. Hello? Do we have Allison on the line?
ALLISON (Caller): Yes.
CAVANAUGH: Hi. Good morning, Allison.
ALLISON: I was calling in with a question that it seems – What is the advantage to—it seems absurd to me—what is the advantage to keeping the identity of a known HIV infector that is careless with the fact that they have HIV, what is the advantage of keeping their identity confidential? We don’t keep the identity of sex offenders, bank robbers, murderers, you know, confidential in the name of public health or in the name of public safety. Just wondering, what is the – what’s the real advantage to keeping them confidential?
CAVANAUGH: Thank you for the call, Allison. Dr. Little.
DR. LITTLE: Well, I’ll just start by saying if we have a known transmission network with, for instance, I can’t do this without graphics on the radio, but five individuals and, for the sake of argument, we’re going to call out person A within that transmission network. All we’ve been able to do to date is say that these five individuals are infected with the same strain of virus. We don’t know that person A infected the other four in the group or that person B infected the other four or that all five were infected by someone else that we haven’t even found yet in the community. So, frankly, we don’t know that anyone in that group has done anything wrong. They’ve had consensual sex. But we don’t know who has infected whom. We’re simply trying to do a public health intervention by limiting onward transmission. We don’t know that anyone has – who has infected anyone else within the group, simply that they are infected by the same virus.
CAVANAUGH: And Mike.
KALICHMAN: Yeah, I want to distinguish, Allison’s question is a really important one, perhaps more in the future than now. Now it isn’t likely that you can predict specifically who infected whom in most cases. In the future, we might be able to do that. So we have, and is something that the listeners in your audience might want to consider, is how they fall on the two choices here. One choice is to say we should keep things as anonymous as possible as tends to be done now, and we’re only asking general public health questions. The result is everybody will be happy to participate and contribute their blood for those studies. The other possibility is, say, we open this up, as Allison has proposed, and say when we can figure out an individual is a cause of infections, we should intervene for the public health’s interest. But there’s a down side to that and the down side is that many members of the community may say researchers are going to be using my information in ways I hadn’t anticipated. Rather than risk that, I won’t participate. So you then lose the very people that you want to be part of your study. We have two tough choices to make.
CAVANAUGH: A lot of people equate this, the possibility of being able to identify someone who is the source of frequent HIV infections as the kind of thing that goes on when somebody is not taking their tuberculosis medication and they are out in the community and they are infecting people because they are basically not taking care of themselves. And I’m wondering, I know that Public Health has the right to detain such an individual with TB and remove them from the population so that they are no longer a risk. Do you see any similarities, Dr. Little, in that scenario?
DR. LITTLE: No. I mean, I think that one of the major differences between HIV and tuberculosis is that while they are both communicable diseases, you can catch tuberculosis by sitting next to someone on the bus. You cannot catch HIV by sitting next to someone on the bus. So the reason that people with tuberculosis can be detained and that means isolated against their will, and I should say that is rarely done and it takes some significant…
CAVANAUGH: Legal maneuvering?
DR. LITTLE: …legal maneuvering, thank you. And the reason that is done is because it is a potentially life threatening disease. It is potentially communicable to people who are going about their daily business and it can be transmitted throughout relatively casual contact by people that you can meet in your daily contact, typically through airborne exposure. HIV is transmitted through sexual contact or needle use so it requires a much greater degree of intimacy and, as such, I would not imagine that those same restrictions of isolation and enforced confinement would ever be applicable to HIV.
CAVANAUGH: But, Mike, if we chose, as a collective society, option B that you presented, what kinds of intervention would go on? I mean, if, indeed, Public Health officials could intervene with a frequent source of HIV infection, what does that mean?
KALICHMAN: Well, it means, I think, people’s worst fears. You know, that somehow society is going to break down your door and imprison you. Now that doesn’t have to be the direction we go but that’s the fear. What’s more likely and more ideal is that this would be an opportunity to have a Public Health intervention with an individual to say, look, this is what’s happening because of your behaviors, because of your actions. But, again, I want to make sure that everybody’s clear that we’re talking about a future…
CAVANAUGH: Yes.
KALICHMAN: …that isn’t yet here. We don’t yet have the ability to say this with confidence and probably even in the five-year frame that Susan mentioned we’re only going to have probabilistic information. We will have increased likelihood of having an answer to these questions but not certainty. And the question for the public in tonight’s forum and today is, so how do we act in the face of uncertainty? How much certainty do we need before we take extreme measures?
CAVANAUGH: Dr. Little, in the minute that we have left, I wonder if you think a lot of these questions could be resolved more easily if some of the stigma that surrounds HIV/AIDS were to dissipate.
DR. LITTLE: Absolutely. I think that HIV has been a stigmatized disease, as I already mentioned, since its inception. And I think a lot of that arose because of the way, from the very beginning, frankly, the healthcare system treated HIV as a separate, distinct disease from other sexually transmitted infections. And the more we can handle HIV as part of our usual and regular medical practice as any other sexually transmitted disease, be it testing, treatment, care, management, I think that a lot of these issues will become less of a challenge the more HIV care and management becomes less stigmatized.
CAVANAUGH: Thank you. I really do appreciate both of you speaking with us today, Mike Kalichman and Dr. Susan Little.
The next Ethics Center Forum: "Analysis of HIV Networks: Can We Protect Both Public Health and Confidentiality?" is today at 5:30 p.m. at the Reuben H. Fleet Science Center in Balboa Park. You can go to KPBS.org for more information. Thank you for listening, and stay with us for hour two of These Days coming up in just a few minutes here on KPBS.
