Public Health Arguments and Civil Rights Protections

For some time now gay civil rights (aka gay rights) activists have argued that same sex relationships and conduct should be decriminalized because evidence shows that in societies that don't do so there is a higher prevalence of HIV among gay men.

Let there be no doubt, the latter claim of fact is true. There is a fairly substantial body of social science evidence demonstrating that. Opponents of gay rights typically point to that higher prevalence - even in societies that have decriminalized - to bolster their opposition. They usually argue that if their society decriminalized same sexual relationships  (aka buggery, to use that lovely colonial phrase invented by the Brits) even more folks would engage in that high risk behaviour and things would get worse on the HIV fronts. That isn't true, demonstrably so. This will have little impact on these campaigners' messaging, because they're god people. Their opposition to homosexuality is driven by religious convictions plus almost certainly deep-seated other psychological issues. After all, these are the same people that like equating pedophilia and homosexuality. Evidence for that claim is also difficult to come by. There's a method to this madness though, and it's a successful madness. Whole countries (Jamaica and Uganda are just two examples) these days are in the thrall of moral panics when it comes to the matter of homosexuality.

Now, gay rights activists have resorted to engaging in similarly flawed arguments to further their political objectives. To be fair, unlike god people they at least have some evidence on their side (i.e. homosexuality isn't pedophilia, criminalization leads to higher HIV prevalence). However, none of that creates a case for gay rights. At least it shouldn't. Civil rights cannot be contingent on non-immutable characteristics. What if it turned out to be the case that decriminalization of homosexuality led to higher HIV prevalence? Should one then join god people and their campaigns? Civil rights case closed? Obviously not. The case for civil rights cannot be based on public health arguments.

The case for civil rights protections is always and necessarily so based on individuals' liberty entitlements to live their lives as they see fit, as far as self-regarding actions are concerned, on privacy rights, their right to associate with whoever consenting adult(s) they see fit, their entitlement to see their needs treated equally to comparable needs that led to rights heterosexual people enjoy, and a gaggle of other related arguments. None of these arguments are contingent on the truth or otherwise of particular public health matters. After all, where would one go once it was possible to eradicate HIV with a simple pill being taken, or once a working preventative vaccine existed? Too bad for gay rights then? I think not.

That's not to say that opponents of gay rights should not be called on their lies and deception. However, by turning their arguments on their head no case is made for gay rights either.

Addendum: 12:29pm, July 25, 2014 EST.

Of course, it is true that civil rights protections also extend to certain kinds of choices (e.g. religion) as well as other not immutable characteristics such as language. I stuck to immutable because that case is easier to make and it applies to homosexuality.

Conference ethics - my take on the AIDS talkfest 2014

At any given time there are thousands of large conferences held all over the globe. Many of these conferences are mere make-belief, they are set up by conference organisers in hope of extracting good money from conferences goers in order to make a profit. They are not infrequently organized by equally dodgy open access outfits in the publishing industry. I won’t mention names here, but you know who you are.

Then there are other conferences where one wonders why they still exist in the form and shape in which they are held. A case in point is the International AIDS Conference. This biennial event was held in 2014 for the 20^th time, this time in Melbourne, Australia. In the old days the location of this conference was considered to be an important political decision, as its mere magnitude guaranteed the AIDS community in the host country a high public profile for their cause. The good and great would come to address the conference (Bob Geldof and Bill Clinton offered the necessary glitz in Melbourne) and say nice things about people with HIV/AIDS and – more recently - the need to provide affordable medicines to people in developing countries. Well, that was after the advent of life-preserving medication. Prior to that there was a much more real sense of urgency, people fought over trial designs and the meaning of however fragile trial outcomes and unjust discrimination against people with HIV and AIDS. One conference, held in South Africa, was addressed farcically by an ANC government representative steeped in deep denial about the role of HIV in AIDS.

Today AIDS is primarily a disease killing the world’s poor. That’s true for the USA, but really this uncomfortable fact holds true for the global south. Access to affordable medicines has greatly improved, but millions who could clinically benefit from HIV medicines have to date no affordable access. Worse, the economic crisis in the West meant a scaling back of donor programs, leaving those who managed to access life-preserving medicines in some instances with unexpectedly having nowhere to turn to due to program closures. A great deal of managerial incompetence and corruption in countries in sub-Saharan Africa means that people in need of HIV medicines are not receiving them. Preventable deaths occur frequently.

Given this background, holding a conference such as this in Melbourne, Australia, of all places, truly borders on the absurd. Between 14,000 and 16,000 conference goers flew from all over the world to attend this latest AIDS talkfest in a rich location where HIV/AIDS, frankly, affects a fairly small, very well clinically cared for number of people. Much as I appreciate the joy that must come to North American and European conference goers from travelling to Down Under, this has been a truly bizarre location to hold this conference in.

Nothing much was truly achieved by this giant assault on our environment courtesy of thousands of academics and activists circumventing the globe to talk to each other in an endless stream of sessions and meetings. In the age of email and tools such as Skype that could have been achieved with less environmental destruction.

So, talking about conference ethics (I will trademark this term!), is it unreasonable to ask of organisers of such conference to consider only locations where actually large numbers of people still fight to survive this disease and perhaps give locations a miss where AIDS has become a manageable chronic condition, and where the civil rights of HIV infected people are thankfully well protected?

I quietly assumed to this point that much is served by holding such gigantic meetings at all, alas I am skeptical. After all, relevant clinical research will be published quickly in relevant journals these days, the time delay is negligible, researchers will know each other by means of email or Skype or teleconferences. Activists worth their money would have figured out ways to let their donor monies go further by not attending these talkfests and spending the cash instead on actual work aimed at furthering their objectives.

Guess if travellers in the AIDS business need to travel - usually on other's dime -  at least they ought to travel to places where much work needs to be done, not to places that are comparably well-off. Perhaps not as nice as Melbourne, but slightly more justifiable.

The Facebook study scandal that wasn't

Here's a piece I have over at the Philosopher's Eye on the Facebook study alluded to in the post below.

PNAS, the prestigious Proceedings of the National Academy of Sciences, published on June 24, 2014 the results of a study involving Facebook (FB) users. The authors wanted to ‘test whether emotional contagion occurs outside of in-person interaction between individuals by reducing the amount of emotional content in the News Feed.’ The researchers investigated this question by manipulating the newsfeeds of a few hundred thousand randomly selected FB users. Some received more positive messages, and some received more negative messages. The identities of these users were not known to the researchers in question. FB permitted social scientists to mess with some of their users’ brains for the purposes of a research project. It’s something that FB does frequently. The contents of its news-feeds are manipulated all the time, its algorithms changed often. FB users have agreed to this since 2012 when they signed up to a user agreement for the free service stating:

’… we may use the information we receive about you … for internal operations, including troubleshooting, data analysis, testing, research and service improvement.’

For reasons I still fail to understand fully, some high-profile US bioethicists came out in the typical fashion bioethicists have become notorious for – expressing outrage in various forms and shapes about the supposedly unethical nature of the study. My esteemed colleague Robert Klitzman, for instance, described the study as ‘scandalous’.

My own view of the study is that it isn’t scandalously unethical, even though it would have been better had the research participants been informed about being targeted for research purposes. It seems absurd to me that there are no complaints from these ethicists if FB does exactly the same thing (manipulating its news-feed algorithms to change its users – mine for crying out loud! – state of mind while we use their service). However, grandiose hand waving is triggered if researchers do the same in order to address important research questions. From a consequentialist perspective, this doesn’t make a great deal of sense. More than that, we FB users are informed that ‘information we receive about you’ may be used for ‘testing’ and ‘research.’ Bioethicist Art Caplan, meanwhile, thinks that telling us that we might be subjected to research projects is insufficient for us to truly comprehend that we might be subjected to research projects. Really!

Well, to cut a long story short, Michelle Meyer and other bioethicists – myself included – came together to pen a response to our outraged colleagues, defending the research in question. Nature, of all publications, took our commentary. Check it out some time, be it just to reassure yourself that bioethicists aren’t all about seeing scandal and problems in every corner of the universe. Since we wrote our piece, a number of bioethicists, including Dan Brock, Peter Singer, Dan Wikler and others have signed on to our statement.

Let the debate begin.

We argue in Nature today that recent FB research wasn't obviously unethical

Michelle N. Meyer, John Lantos, Alex John London, Amy L. McGuire, Lance Stell and I argue in today's edition of Nature that the recent, much condemned Facebook research wasn't obviously unethical. Our arguments are here, a list of supporters including luminaries like Peter Singer and Dan Brock can be found here. 

Let the argument begin!

Grinding my gears - Truvada marketing

I don't know whether you watch Family Guy, but if you do you will recall Peter going on to become a minor TV celebrity in an episode where he goes on rants about whatever it is that's grinding his gears, as he puts it so succinctly.

Take this commentary in that spirit - I may have missed relevant information (aka Peter …). I know that HIV prevention/Tx folks check on this blog every now and then. Consider yourselves invited to enlighten me if I missed a beat.

So, Truvada marketing by WHO and other assorted HIV prevention folks is grinding my gears in a big way these days. WHO reportedly advises that sexually active HIV negative gay men in sero-discordant relationships should go on Truvada. What grinds my gears is that to date there is not a single documented case of HIV transmission from an HIV positive guy on HAART whose viral load is undetectable, courtesy of that medication, to his sex partner. For the sake of the argument, assume that there are in fact a (very) small number of such transmissions happening. How can that be a good reason for advising every HIV negative gay man in such a relationship to initiate a regime of - frankly - fairly toxic drugs for ever (i.e. while he is sexually active)? Unlike Gilead's information on its Truvada website, the UK NHS provides a clearer picture of what you HIV negative gay guys can expect if you choose to join the Truvada train. These ain't sugar pills.

What grinds my gears it that we have zero clinical evidence that folks who take Truvada prophylactically, and say, successfully, throughout their sexually active lives, fare any better than those who wait with going on HAART until they sero-convert. What one would want to know, obviously, is whether folks who wait for a possible infection and then get treated, fare any worse in terms of mortality/morbidity than those who have boarded the Truvada train at gigantic cost to the health care system or their insurance company or to themselves. The truth is, we don't know that. This hasn't stopped WHO from marketing Truvada busily on behalf of Gilead, the drug's manufacturer.

Some have argued that folks would typically only need to use Truvada for a few weeks prior to an unsafe sexual encounter and then possibly use post-exposure prophylaxis afterwards. So, the argument continues, they'd be better off than those who'd sero-convert and have to take HAART for the rest of their biological lives. I'm sure Gilead's sales executives quietly laugh at this logic, because none of us plan for an unsafe sexual encounter (you know, in the real world nobody will say, hey, I'm going to have unsafe sex in six weeks time, lemme go on Truvada now, when unsafe sex done, I'll stop it again - sex doesn't quite work like that). In any case, post-exposure prophylaxis works in around 92-95% of cases, so why not stick to such a regime if you had unsafe sex with someone who's HIV positive and doesn't have an undetectable viral load.

Now, this was what I consider the strongest rationale for advising sexually active men to go on Truvada as a means of HIV prevention. Apparently, WHO hasn't quite left it there and went all out, it recommends that all 'men who have sex with men consider taking antiretroviral medicines as an additional method of preventing HIV infection'. This quote is from WHO's own press statement on the release of its report.

Talking about grinding my gears, this definitely does. For starters, the majority of sexually active gay men do not become HIV infected. And yet, WHO thinks they all should go permanently on highly expensive  - prices admittedly vary, in Canada they're at 1100 $ p/month, in South Africa at a more palatable 9$/month - and fairly toxic drugs. At this point in time we do not even know what the impact on their health would be 20 years down the track. As mentioned earlier, even for those who might become infected we do not know whether they might not be better off beginning treatment after they got infected than using comparable drugs throughout their lives to prevent an infection.

Let me cut thru the chase here: If WHO was an honest organization, it would concede that the only sound motive for advising all sexually active gay men to begin taking Truvada is a public health rationale, and not the health of those who take those drugs. Incidentally, that makes sense, WHO does mostly public health stuff anyway. If all or most sexually active gay men would take Truvada, we'd probably be able to get rid of the bug over a generation or two. This would come at a medium to potentially high price paid by the majority of gay men who would take this drug even though they'd not have caught the bug anyway.

That being said, I'm not trying to persuade anyone not to go on Truvada, I don't know whether it's a good or a bad idea, what grinds my gears is that in the absence of crucial clinical questions being settled, sweeping recommendations are made by WHO with a view to putting perfectly healthy gay men throughout their sexually active lives on seriously heavy medication with a side-effects list as long as your weekend shopping list. This is dangerous, because the absence of vital clinical evidence suggests there ought not to be consensus advice of this sort.

I can't wait for NICE to step in here and call this nonsense for what it is, a marketing exercise.

Summer update on various projects

Apologies to everyone checking in every now and then regarding new posts. I have stopped writing my weekly column for the Kingston Whig-Standard, mostly because management changes meant my weekly weekend spiel became a whenever spiel. Their prerogative, didn't work for me tho, so I quit. Still, you can see that once the pressure is gone to produce toward the end of the week your 750-1000 word text for public consumption, the odds are you won't (not while the World Cup is on anyway). 

That being said, I have not been entirely lazy either. I produced a piece on assisted dying in Canada for a Canadian journal. Also completed a piece for a US medical journal defending infanticide for certain cases of very severely disabled newborns. A lengthy piece I wrote with Erik Zhang on obesity ethics is stuck in the review process of an unnamed journal in another part of the world. Will see what comes of that one. What else, oh yes, right, I also wrote a paper for a US bioethics journal that I promised I would not write again for. It's part of my let bygones be bygones exercise. They invited me kindly to write on a topic that has remained dear to my heart ever since I worked on this in my doctoral thesis about 2000 years ago, namely the issue of providing access to investigational new agents to people suffering from catastrophic illnesses. It's a topic that pops back up in bioethics papers every few years. I'm glad it's not dead, because there's serious work to be done, certainly on the regulatory frontiers.

I am currently sitting with Suzanne van de Vathorst on a paper discussing treatment resistant major depressive disorder and assisted dying. That's it on the articles' frontiers. 

I have complete work on the significantly revamped 3rd edition of Bioethics - An Anthology that I am jointly producing with Helga Kuhse and Peter Singer. New sections, new content, new section introductions, you name it, we did it. It's all off to the publisher, and they've begun a few weeks back gathering those precious reprint permits. Wiley assumes it should be out by August 2015. Buy it so that I can buy a bigger house! Just kidding :).

I have been a laggard on two other book projects, I should have delivered This is Bioethics by about this time to Wiley but I told them we'd be done with it closer to the end of the year. Ruth Chadwick, my friend and colleague at the helm of Bioethics (the journal), has agreed to jointly author the book with me. We agreed about two weeks ago on the 'who does which chapters' and writing continues in all earnest. The good news, I'm a a bit ahead of her, having done major chunks already.

Not so well fared another project, also for Wiley, Global Health Ethics that I am to produce with Christopher Lowry. We are well behind (well, I am), but we'll be getting there once This is Bioethics is out of the way.

Meanwhile at Bioethics, the journal is happily ticking along. All sorts of upheaval at the publisher's end, new editor at their end, production editor's responsibility shifted from the publisher's Singapore office to its Manila office, but truth be told, this has close to no impact on our operations. We have exciting special issues lined up, so stay tuned for more to come. Which reminds me, I need to do an editorial by the end of August for our October issue. Topics galore I suppose. At Developing World Bioethics  we are doing very well, too, thank you very much. If anything, we're struggling with our page budget. By now we got a 2 year back-log from acceptance to print, which is really not good enough. The only reassuring thing is that we also offer Early View publication with fixed doi number for your article, so accepted content gets published for all academic intent and purposes within weeks of acceptance, it's just that there's a wait for getting the content eventually into a print issue. It looks to me as if print-copy is on its way out for our journals, given that most people these days access the journal on-line only. Good for the environment, not so good for me, I love print-copy. 

Last but not least, at the time of writing there has been a bit of a storm-in-a-teacup about an experiment researchers did over at Facebook, and had the tenacity to publish in the PNAS. Some of my colleagues (you know which ones, those that always are on the ready when the papers, TV etc call, even more on the ready than I am - do they ever sleep?) went on a rhetorical rampage condemning the trial, there's talk of Tuskegee and Mengele, egregious wrong doing, ethical misconduct and so it went. Well, I think they got it terribly wrong, and with a bunch of other bioethicists we drafted a public response that we're hoping to place soon. I will post more on this when it's out.