Thursday, August 7, 2014

The Ethics of an Outbreak

There are a handful of things in this world that I am wildly passionate about, aside from my family.

One is maternal/child health.

Another is interpreting the nuances of legal decisions so that the average person can understand them.

The last is bioethics.

Once upon a time, I was to be a bioethicist. True story.

I was already sitting in on ethics committee panels for major hospitals when life decided to tell me that I really didn't know what I was going to do. Then it pointed a finger at me and laughed.

^^^pretty sure about that part.

Anyhow, when I was in college I became fascinated with the area of bioethics. It is in this place where medicine and the law and philosophy all intersect. It's complex and multi-layered. There are variations in every single individual that must be accounted for in some circumstances, wholly ignored in others. There are times that a clear right and wrong seems to exist and others when there is no definitive way to tease out rightness and wrongness, where it all blends and fades together.

Earlier this week, I wrote about the Ebola outbreak. In that post, I tried my very best to present unbiased information. This post will not be like that one.

This post will be about the ethical issues involved, and there are many.

Incidentally, ethics are not something that everyone will agree on, for all the reasons mentioned above. This post reflects my personal ethics. I don't expect anyone out there to agree with me.

Ebola virus, CDC
The first major ethical issue, which I alluded to in the initial post, is the uncomfortable truth that we tend not to care about what happens in other parts of the world until there is a possibility, however remote, that it could harm us here. The luxury of living in the first world is that we can pick and choose whether we watch the news, we can distract ourselves with gossip and entertainment. We can decide what our priorities are and stick our heads in the sand about anything we choose not to engage.

We aren't living in the outbreak zone, so we have to make a conscious choice to care, or at least we had to until now. Now that the threat extends outside that small place in the world, we care because it could affect us.

There are many who defend this kind of privilege, who say that those fortunate enough to live in the insulated first world should reap the benefits of doing so. That all the other things we create to worry about are sufficiently important that we can effectively ignore everything else that happens over there.

And, obviously, people do. Until the threat that is far away becomes one that might affect us, and then suddenly panic sets in. Fear breeds misinformation, those who believe in rampant conspiracies thrive on moments such as this. The reality is that our risk here is minimal. We don't just enjoy the luxury of being far away from the outbreak, we enjoy the luxury of sanitation, of the availability of medical supplies, of facilities equipped to deal with sick patients....all of which already protect us from the diseases that kill thousands of people in underdeveloped nations every year.

The second major ethical issue here pertains to the return of the patients brought back to the United States. Some have argued that they shouldn't have been brought back because of the risk they pose (ignoring the fact that the risk isn't actually that high because we know they are infected so a multitude of protective measures have been taken). This line of reasoning is one that amuses me in many ways because those most vocal about the issue are quite often the great defenders of any other American doing good abroad being rescued at any cost...unless the person being rescued can present a tangible threat to them, and then suddenly they are willing to wash their hands of them.

The fact is that the people, our people, who are over there working are the ones unwilling to have stuck their heads in the sand. They are the people who genuinely care what happens to others regardless of which nation they happen to have been born into. They are the altruists, the caregivers, the ones who refuse to turn a blind eye to what happens elsewhere. Their personal ethics took them to the other side of the world to help other people...and now they need our help. To me, it's a black and white issue. We helped them because it was the right thing to do.

The third major ethical issue has to do with the response of nations like ours to the outbreak. The CDC just yesterday determined that the Ebola threat is the highest level, and will be sending additional resources to the area. Some, myself included, make the argument that this should have been done far earlier in the outbreak. That we, as a nation, not just as individuals, need to collectively care more about what happens around the world, not just because it might someday present a threat to our way of life, but because it is the right thing to do. We have the resources. We should have sent them sooner.

There are many Americans, far too many Americans, who don't seem to understand just how wealthy our country is. We spend money on wasteful things, we budget billions for fighter jets no one will ever fly. As much as politicians may not want you to believe it at times, we have plenty of money in this country. How they choose to spend it is a different issue entirely. In a time of legitimate crisis, we have the resources not just for us here, but to share with the world. If we can have a naval fleet report in days to anywhere in the world, we can send medical supplies and people to an outbreak zone. It's about choices, and though there are people who depend on your belief that we don't have them, we do.

The fourth major ethical issue has to do with access to the experimental serum given to both returning Americans. Both of them have begun the process of recovery, though they are not out of the woods quite yet. It is impossible to say with any degree of certainty whether the use of this serum is what is making the difference for them, whether it is the level of care they are now receiving, whether they would have survived regardless, or whether it is a combination of all of the above.

We don't know and we never will know. The issue is complicated by the fact that the mortality rate from this outbreak is much lower than it has been in the past. The disease is still a quite deadly one, yes, but it is only killing about 60% of the people who become infected, versus the 90% we would have expected based on the past.

There are a few issues involved with the serum. The first has to do with whether it should be administered to humans at all this early on in the process, whether it is safe to give (even outside of any arguments about whether it might be effective). Most bioethicists fall into line with the idea of patient autonomy here, and would argue that for those in life or death situations, they should be allowed to consent to any treatment they choose, regardless of whether it has proven safe, because they just don't have other options. Some believe that only fully approved treatments should be offered, but in a situation like this, time is of the essence. These patients don't have years to wait out trials. They could be dead in days.

The second issue with the serum has to do with the question of why it was just recently developed. Ebola has existed for decades, never posing a threat to anyone outside the outbreak zones until this year. Some make the geopolitical argument that the resources of the United States (and other nations) are being expended to the level they are now only because of a potential threat to our citizens. Those who make that argument have a point. Do we only care about treating diseases that affect our citizens? Should we?

^^^I'm not getting into that argument with anyone. Honest. It should be fairly obvious where I stand.

The third issue with the serum has arisen in the days since it was given to the returning Americans...and it's simple. If this serum exists, even only in an experimental form, why is it only being used for Americans? Leaders in other nations and worldwide health experts are asking that question now, wanting to know why we are withholding a treatment that could potentially save lives in the outbreak zone. Wanting to know what would happen if an outbreak like this occurred in a Western nation...would the serums only be made available to a select few or would the development be rapid and widely available?

The answers being given, or should I say spun, have mostly to do with assertions about small quantities being available, the trials being too early in process for the drug to be administered safely...though we know now that they are clearly willing to take that chance on a handful of Americans.

There are many other issues involved, but this post is already running long as it is. I could, quite literally, talk about this stuff all day. What I ask of you reading this today is to consider these issues. Think about them, really think about them. Look outside your own perspective. Understand that the threats to us here are fundamentally different than those that exist for people around the world. Realize that there are so many issues that play into an epidemic like this one, and that nothing is as simple as it seems.

Or in other words, soundbytes on television aren't enough for anyone to consider themselves fully informed.

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