Life as an Extreme Sport

wide reflective equilibrium and HIV testing recommendations

I spent a few hours this evening reading, and writing up a rough proposal for a paper due soon. This is that proposal,…

Thanks so much for the recommendation of Norman Daniels. I’m not sure how
I’ve not come across him so far, but I’ve picked up both “Seeking Fair
Treatment: From the AIDS Epidemic to National Health Care Reform” and
“Justice and Justification: Reflective Equilibrium In Theory and Practice”
and they’ve helped crystalize a lot of the more abstract nature of Rawls
for me.

For the first paper topic, as we already briefly discussed, I would like
to do an applied analysis of the new CDC HIV testing guidelines. While
there are several major changes in the new recommendation guidelines, what
I am specifically interested in discussing is, I suppose, the fairness or
justness of testing adolescents, particularly those in the 13-18 year old
age range. Limiting my scope to New York State law, the basic problem is
this: an adolescent can consent to HIV testing, and notification laws do
not require that the parents of an adolescent be contacted if the minor is
seropositive. However, a minor cannot consent to HIV treatment, parental
approval must be sought. While family planning clinics can offer HIV
testing, the only treatment they are allowed to provide to a minor is that
relating to family planning – that is, to provide birth control services,
abortion access, and STI testing and medical treatment for that which can
be cured.

The problem, then, becomes a conflict of several interests: the social
obligation to protect those who’re seronegative, the social obligation to
protect the privacy of adolescent sexual lives, and creating a situation
of conflicting interests for health providers, who cannot protect the
privacy of seropositive teenagers and treat them for the disease.

I think that the best way to look at this is simply utilizing Rawls’ wide
reflective equilibrium, basically testing various aspects of the moral
beliefs we hold against one another. Can we use a fair procedure to select
among the various moral beliefs/princinples that are coming in to
conflict, and reach some principled conclusion (whether it agrees or
disagrees with the CDC recommendations)? Daniels provides a framework for
how to approach this, without specifically addressing the issue of opt-out
HIV testing.

I have a feeling that will give me more than enough material for the
suggested length of this particular paper, especially if I follow Rawls
model of showing how his theory differs from what utilitarianism would
demand (and in this case, the utilitarian answer is crystal clear –
interestingly, I’m not entirely certain what the Rawlsian answer will be).

So, I think that’s my topic proposal. Please let me know where you think I
should go with it, or any modifications I should make.

Another Anecdote Masquerading as Research

The Washington Post, today, tells us that an electrical technique may help to revive head-inury victims. On the face of it, it sounds promising: researchers at Cornell University’s Weill Medical College, the JFK Johnson Rehabilitation Institute and the Cleveland Clinic tried an established therapy known as deep brain stimulation (DBS), typically used to treat chronic pain, epilepsy, depression, and a host of other medical concerns, to stimulate the brain of a patient in a minimally conscious state. The result suggests that there might actually be a significant benefit to the minimally conscious patient: more reported days of alertness from people who were not aware when the patient was being stimulated, and when not. There’s also indication that the device doesn’t need to be working in order for the patient to receive benefit, that the benefits extend beyond the immediate.

It’s been tried before on patients in PVS, with no success. This is the first time it’s been tried in a minimally conscious patient, and shown to be successful. And there-in lies the problem. Patient. Singular. One. Three research institutes, one patient, and how many media articles talking about the revolutionary new discovery? Do you really think it matters that the story tosses one or two lines towards “this is an experiment” and “we need to try it in more people”? It’s reported as research, it’s reported as working, it’s reported as just needing more followup.

This is another example of McGee’s recent essay in The Scientist, of a case report being reported as research, an anecdote substituting for a controlled study with many patients. Yes, the institutes have jumped thru IRB hoops and have official sanction for the research, but one person does not make research. One person makes a story, an interesting aside, something to continue pursuing – not something to report to the world at large as a successful research protocol. It is, at its most basic, cruel to popularize this information when we don’t know if it will actually be successful; it gives what could amount to false hope, and that is simply irresponsible.

It’s a fascinating story, and it will be fascinating reserach when they get more people in and through the protocol. Until then, though, I think we need to question the wisdom of repeating one-off cases like this as anything more than what it is: to quote Stephen Greenblatt, it’s an anecdote of the register of the real.

moments of zen

I am having a Monday. They’re rather traditional around here, but that doesn’t really make them any easier to get through.

I’ve been doubting lately. Doubting, a lot, that I’m on the right path, doing the right thing. It’s harder than I thought it would be, starting over in a new place, in a new field. I feel so behind, and like nothing I do will catch me up. All the work I did, the effort, all the long and hard hours; it got me here – but I don’t know that it’s enough to keep me here.

The odd thing is, it’s not because of the test I got back today – I knew I was going to do poorly on it, and I was okay with that. I have to give myself some room here, and I know it; I’ve not taken a test in years, I’ve never taken a test with this prof, and I didn’t know how the test would be structured – and I find it near-impossible to study without knowing the basic style of the prof. The lowest test score is tossed, so it’s not like I did anything bad. But I think the prof was distressed, and that combined with everything else…

I’ve not talked about it here, because I don’t feel like it’s proper to discuss, or really my place, but there have been some drastic changes happening with the dual degree program I’m in, and just exactly where all the cards are going to fall is still unknown. So I moved across the country for something that is no longer a set thing. My PhD is still there, but I didn’t come here for a PhD in Philosophy – I came here for a dual degree, for continuing with bioethics, and getting that experience. And people are still working with me on it, and I’ve been assured and reassured that I will be taken care of, and I have no reason at all to question or doubt it, but it’s stressful. My nails? Gone – and I’d done so well, not biting them for almost a year. I consider that, more than anything, an indication of how stressed I’ve been.

On top of that, I feel isolated. My program is mostly men, and they’ve clumped together and are doing things together. They hang out, they’ve developed in jokes – the one’s starting with me integrating in with the older students. There are a couple of women, more than I was expecting, but of the four others, two have children and the other two have long term boyfriends. They’ve lives outside school, and don’t hang out as much as the guys do. So in a lot of ways, it’s just me and the boys, and I apparently have cooties. I was warned about this a long time ago – academia is still male. We’ve got three female teachers in the department; one’s my adviser, and she’s already acknowledged that the gender imbalance makes life hard. And it does.

I spent the morning doing email, leading me to the conclusion that writing email stresses me out to an insanely inappropriate degree, but I’m always concerned my tone won’t come across properly. I’ve one prof worrying about me, and another that I seem to be able to speak the language of, but he doesn’t speak mine.

And yet there are bright spots. Emilie’s email made me smile; I seem to have picked up a couple of readers from a blog I quite admire, and have been reading since its inception. And I find things like this, and realize that those are the small moments that make life living, where the magic escapes the imagination and flows into the world.

I know it was just a rough day, with a lot of things piling onto one another. I know this, but I still doubt. What if there’s a better way for me to get to my goal? Is this really the right path? Or should I be taking another route – it’s not like this is the only one. This is the only one, though, with the opportunities presented. It’s not that I doubt myself, I know I can do what I want to do. I shine when you put me into anything involving bioethics. It’s the rest that’s in question.

Winston Churchill said that if you’re going through hell, keep going.

I don’t mean to complain, or make life sound bad. I’m so grateful to the people who’ve supported me so far, taken time out to answer my emails, or go to lunch with me, or to contact me via the web form and give encouraging words. But I just feel this huge weight on my shoulders, and the moments of magic are fleeting. It makes them special and cherished – but I could use a little more of it in my day to day life.

The Gardasil Controversy

This post on the Modestly Yours site, where I was directed by a friend (cuz y’all know I sure don’t qualify), perpetuates many of the myths and beliefs about Gardasil, the HPV vaccine. I did reply to the post in their comments, but since they are moderated and I was blunt in my disagreement, I don’t necessary expect the comment to make it to air (as it were). So, in the interests of preserving what I wrote, because damnit, I actually bothered to fact-check,…

Sorry, but I strongly disagree.

First, to clear up some misunderstandings in your post. Gardasil actually protects against four of the main variants of HPV, types 6, 11, 16 and 18. To break it down, HPV 16 and 18 cause 70% of cervical cancer and adenocarcinomas, and 50% of the precancerous histologic lesions, CIN. The four variants together cause 90% of genital warts, which can be infectious and invisible for both men and women, and are not protected against from common prophylactic means (they can be, but as they can grow in areas not covered by condoms, they can be transmitted when you believe you’re having safe sex). Since warts can be flat, smooth, internal, or simply invisible, it’s extremely hard to get an accurate number of how many cases of HPV/genital warts there are – 200,000 per year is the tallied number, but it’s expected to be significantly higher. Unfortunately, the highly cancerous versions of HPV tend to be the ones that are invisible to detection.

It’s also worth remembering that HPV is indicated in other forms of genital cancer, as well as soft palate cancers.

Secondly, the vaccine age approval is nothing more than a reflection of the ages that Merck tested the vaccine in. This has practical reasons: most people, by age 26, are infected with HPV. Women who test clean of any of the variants being covered by Gardasil are encouraged to have the vaccine, regardless of their age. While their is not proof it will work, the body really doesn’t have an internal clock going “oh, you’re 28, so Gardasil won’t work in you.”

While the majority of HPV cases do clear up on their own, those are the low cancer risk variants that can be unsightly, but cause no real harm. (There are, after all, over 40 variants.) But the vaccine is not targetting these low cancer risk variants, it’s targetting the ones that kill.

Gardasil is also one of those vaccines that has been developed not just by the Big Pharma, but in conjunction with the National Cancer Institute, whose interest is in protecting the public, not in benefiting the stockholders. While it’s certainly more than sane to be suspicious of Big Pharma’s, and to carefully read the FDA decisions, the CDC isn’t implicated in or even involved in vaccines on the level you imply. Beyond that, the true test of science is empirical study and peer review – this is where the issues with Vioxx came out, after all. In the case of Gardasil, empirical evidence from around the world backs up the claims of the NCI and Merck. There is nothing in the vaccine suspension that brings any cause for concern, and is in fact the standard suspension for any number of vaccines we give children and ourselves daily.

Finally, though, your argument about “social engineering” and “childhood” are the most spurious. You’re suggesting that by vaccinating a 9 year old against HPV, the 9 year old is going to run out and become sexually active. This is hogwash, plain and simple. There is absolutely zero data that would even give this the merest credence – tell me, when you received your tetanus vaccine, did you go out and step on a rusty nail, just because you could? I mean, it might have been painful, but it wouldn’t run the risk of hurting you.

This is the exact same logic you’re using to argue that Gardasil is going to confer some sense of irresponsible behaviour on girls. But when you take the emotional “omg my baby is going to have sex eventually” aspect out of it, and transfer the example to something as benign as tetanus, the fallacy of the argument becomes clear.

But beyond that? Children receive numerous vaccinations through-out their childhood, and well into adulthood. If you think kids pay any attention to what’s being injected into them, you’re giving way too much credit to your kids. For them, it’s a doctor visit, it’s a needle, and that’s all. Go up to any 12 year old and ask them what vaccinations they’ve had – they might be able to list tetanus, especially if it was under a painful circumstance, and MMR, but that’s it.

Yes, there are recommendations for avoiding HPV infection, and they’re the same for avoiding any STI. But all it takes is sex with one person, and you cannot judge infection visually – there’s no way to know. (And this doesn’t even address things like date and stranger rape, and the vaccine is not effective after exposure.)

Thinking beyond the self for the moment, there are also future children – fetuses can be infected by HPV upon birth. Many women with precancerous and suspicious HPV are recommended and counceled to have their pregnancies time with a “clean” cervix in an effort to downgrade the risk to fetus.

Yes, it can be uncomfortable to realize that children are going to behave in ways that you don’t approve of… but as a parent, your job is to protect your child as best as possible. That means protecting them from danger, and cervical cancer is really, really dangerous. Yes, the short term means acknowledging the sexual potential of your child, but it is, in the long run, the better thing for your child.