COVID-19, rationing and the question of age

Discussions about the role that age should or should not play when allocating medical resources during the COVID-19 crisis have been deeply revealing. Probably no bioethicist would come out in favor of basing such decisions simply on (older) age, though there is no problem finding such opinions on Twitter. But many bioethicists heavily rely on likelihood of recovery and number of years of life expected post-treatment in their favored allocation schemes, which in the context of COVID-19 will frequently come down to the same thing. In addition, constructs like the 'life cycle' or the 'fair innings' view are often sprinkled into the decision-making recommendations, i.e. the idea that all other things being equal, resources like mechanical ventilation should be given to those who have not yet been able to enjoy all stages in life's course. It is probably safe to say that, in most influential bioethics allocation schemes, age is not your friend.

These ways of thinking about age and rationing have been defended by prominent bioethicists for years, pre-COVID. Some of their limitations have been pointed out over the years, and in the wake of COVID-19, they are being pointed out again. As Harald Schmidt writes in the New York Times, despite the appearance of impartiality and equity, the criteria of likelihood of recovery and number of years of life expected post-treatment in fact biases access to medical care against those in society whose infected bodies were already compromised by racial, class and other factors. In addition, the idea of making decisions that favor youth over the aged on the basis of 'fair innings' is problematic for similar reasons. Just because a person is old does not mean that they had a good time of it: this confuses quality and quantity. Those who have suffered from systemic discrimination throughout their lives have had 'unfair innings'. And now, on top of all that, they are accorded less priority for medical resources during a pandemic, because they had the audacity to stick around. The common thread here is that commonly promoted allocation criteria fail to acknowledge how their implementation could compound existing social injustice.

But there is also something else. These allocation criteria are commonly promoted as if they are obvious and universally accepted. But there are good reasons to question this, as Nancy Jecker points out in a recent article in The Hastings Center Report (#behindapaywallgoddammit). Moral standing associated with age differs in different cultural contexts. In some countries, youth are favored over those who are old for a number of reasons, including the idea that youth are or are potentially 'more productive' than those who are old. Such countries tend towards a 'hourglass' conception of the life course, i.e. that your moral status gradually diminishes over time, which is supposed to explain why the death of a child is more tragic than the death of an older person. But in other contexts have alternative conceptions of the life course and aging where, if anything, some societies tend to discriminate against the young, and understand the moral importance of a person as something that grows over time and in that person's relationships with others. From this perspective, an older person is not someone lacking in utility whose allotment of time is running out, but someone who has gradually accumulated worth ('become more human') in the community.

There is no way of determining which conception of aging and moral standing is 'correct'. The point here is rather that criteria commonly proposed for the allocation of scarce medical resources in prestigious journals by prominent bioethicists during the COVID-19 crisis carry with them a number of underlying cultural assumptions. Making life-altering decisions on their basis may appear perfectly appropriate in some contexts, but expecting one size to fit all is unreasonable. And this matters in a global pandemic.

Comparing trust-based and information-based consent

I remember watching people in the Democratic Republic of Congo consenting to biomedical research, a few years back. As the process of explaining the research study wore on, you often got the sense that prospective participants (by this time rolling their eyes) really just wanted to sign the form and get the whole consent thing over with. That attitude towards consenting -- not at all specific to resource-constrained settings -- can be explained in a variety of ways. People carry the burden of their own lives and might just be fatigued. Or they may just be more interested in whatever benefits or incentives the study might offer than what the study is about or involves. Yet another possibility is that those who are not really taking in the consent information are basing their decision to join the study on trust: trust in the researcher taking the consent and/or trust in the institution the researcher represents. Some social science studies of participant decision-making processes bear this out: people sometimes agree because they trust that the researchers will act responsibly.

The standard view is that decisions based primarily on trust do not constitute valid informed consent. Such consent is regarded as morally inferior to information-based consent, where prospective participants digest relevant information and make rational decisions in accordance with their own values. An interesting article in Bioethics challenges the standard view, arguing that trust-based consent is not inferior to information-based consent in the key ways that consent is morally supposed to matter: as an expression of autonomy and as a safeguard against coercion, manipulation and exploitation. Of course, consent based on trust is not protective against abuse if researchers or research institutions are not trustworthy, but (the authors argue) information-based consent is equally powerless in that regard.

Will this reasoned advocacy for trust-based consent have legs? Hard to say. There is a lot of confidence (trust?) in the more information-based approach to consent, perhaps because it makes us look more cognitive and rational, or because it can be associated with all sorts of procedures, and we are fond of procedures, even if we also know that people often don't understand much of what they consent to. In any case, the article is well worth a read.

Beware of pharmaceutical companies bearing cheap drugs

Pharmaceutical companies are for-profit enterprises that make their money by selling medicinal drugs. This might seem stupefyingly obvious, but it can get (briefly) obscured when these companies distribute shiny pamphlets suggesting that the promotion of human well-being is their ultimate mission or when they act in seemingly philanthropic ways. Scratch the surface, or just wait until the smoke clears, and the profit motive comes back into view. This is partly why bioethics workers find pharmaceutical companies fascinating and appalling: sometimes they offer a glimpse of what it would be like if powerful multinationals really threw their weight behind public health goals, but only a glimpse, because they inevitably veer off to make money and please their stockholders, sometimes in ways at odds with the ethics of research and health care. They are a kind of ethical rogue element. We need them -- who can whip up their own Klonopin? -- but don't expect them to join your health and social justice parade.

The New York Times published a piece last week about two multinational drug companies, Pfizer and Cipla, who have made an agreement to charge low prices for 16 common chemotherapy drugs. In addition, specialists from American cancer hospitals are helping to set up a digital repository of clinical oncology guidelines (to be incorporated by IRB into their Watson program) to help doctors hone in on the right medical approach. This initiative is welcome news to health systems and patients in the developing world, because of the gradual epidemiological transition taking place there from infectious disease (HIV, tuberculosis ...) to non-communicable disease (especially cancer). In sub-Saharan Africa, current access to cancer drugs and adequate cancer care is, with some exceptions, flat-out terrible. Any improvement in cancer care could be lifesaving. Just as the lowering of HIV drug prices by big pharma, back in the 1990's, was lifesaving for many.

Here come the caveats. Prices for HIV drugs were lowered by the work of advocates, which the pharmaceutical industry initially opposed tooth and nail. (They have reaped profits from antiretrovirals in the meantime.) While lowering drug prices did make a significant difference for patient care, only 50% of those in sub-Saharan Africa currently in need of HIV drugs are on treatment, two decades later. Much more is needed than lowered drug prices to improve patient and population health. More too than the establishment of an oncology database, particularly if what the guidelines recommend implies human or material resources that are not locally available -- the guidelines could be a grim reminder of what you don't have. And the use of IBM's Watson for clinical care has not been a rousing success so far even in the best of circumstances.

Most likely, this initiative will help some people, but less than the early hopes and the hype might indicate. The pharmaceutical companies involved will gain from product visibility and may have a competitive advantage as the African population grows older, cancer prevalence rises and if the economies (and consumer buying power) of African countries strengthen. This may be the long game for them, and could help explain why -- long after these chemotherapy drugs were developed -- they are being offered more cheaply to African countries now.

Breaking the link between colonialism and global medical missions

Rudyard Kipling spoke to the spirit of the age at the turn of the 20th century when he called on newly minted imperial powers to “go send your sons to exile to serve your captives’ need”. Then, the Western popular imagination was captivated by the myth of the intrepid white civilizer setting off to tame the savage wilds. Unfortunately, this fascination did not die out with the empires it justified. We still see ample evidence of it today, “medical volontourism” being a prime example.

            Healthcare professionals from Europe and North America are traveling in increasing number to developing countries for short-term assignments. The effects of most of these assignments range from the benign to the outright harmful; rarely do they offer real benefit to local communities. Volontourists may arrive poorly equipped to deal with their new cultural, linguistic, and even medical milieu. They can end up providing redundant care that undermines nearby healthcare systems and diverts trained in-country personnel to their activities in an “internal brain drain”. There is a constant risk that the lion’s share of the benefits will be reaped by the foreign health workers (and their institutions) who carry back the experience they acquired to their far-flung home countries to decorate their résumés.

            This inequity is a painful reminder of open wounds from a recent colonial past. To the credit of the Western healthcare community, awareness has become firmly established of how problematic medical volontourism can be. Unfortunately, it has yet to devise a solution. The push to professionalize “global health” has hit upon the snag that no one can really agree what the field constitutes. As such, there is no widely-accepted means of weeding out those with a true passion for global health issues from those with only a superficial interest.

            Physician and global health advocate Timothy Laux thinks this role might be played by existing Institutional Review Boards (IRBs). Laux’s case is that, as the only true contender for authority in health science ethics enforcement, IRBs are best-positioned to crack down on medical volontourism.

            Laux acknowledges that, at first glance, IRBs are imperfect candidates for the job. Institutional ethics panels typically confine themselves to review of research proposals and projects in accordance with research-specific regulations and the capacities of the environments they find themselves in. Moreover, they’re frequently overburdened by and understaffed for their workload. Taking the step towards passing ethical judgement on the suitability of individual applicants for volunteer placements—often clinical in nature and on the other side of the world—would therefore be massive. But, Laux asks, if not IRBs, who else?

Well, ethics authorities in the regions where volunteers propose to operate for one. Admittedly, this is easier said than done. Knowledge of bioethical principles, let alone the review boards to enforce them, are likely lacking in many of these environments. A possible solution could be to integrate bioethics into existing health institutions, like local Ministries of Health, who are ultimately responsible for permitting short-term medical missions to take place in developing countries. This would be challenging, as it would require ‘buy-in’ from those institutions, and the cultivation of a cadre of health and other professionals so that they are in a position to inform ministry decisions. But it is not impossible, and local Ministries of Health have a self-interested motivation in maximizing local benefits from these international volunteer initiatives. Or, to be more realistic, they have an interest to at least be in negotiations with initiatives coming from more powerful countries, to minimize the potential for exploitation.     

            All of this is not to say that IRBs have no place in this discussion. They might still be able to take a lead in assessing the merits of students’ proposed projects, a job more in line with their existing competences. But at the end of the day, the final decision makers should always be the communities who themselves stand to gain—or to suffer—at the hands of sons sent to exile.

Gaelen Snell 

Trying to look on the bright side of colonialism

There has been a big flap this week about an article published in Third World Quarterly entitled 'The Case for Colonialism' by Bruce Gilley at Portland State University. The controversy seemingly revolves around how the article was published by the journal's editor despite having been rejected by its reviewers, i.e. a violation of the peer review process. But, of course, the complaints are not purely about the process of the paper coming to light: after all, the author is arguing that colonialism was largely a good thing, and we should have more of it. There would be much less political buzz if the journal's editor had, over the objections of reviewers, approved a paper called 'The Case Against Colonialism.'

As for the paper itself, it is something of a train wreck, and there is a strong case for thinking the reviewers (whose reviews are apparently under lock and key) were right. Gilley maps out a series of epistemic virtues (non-biased data and case selection, internal coherence, falsifiability of claims), which he uses to criticize those opposed to colonialism. In the course of building his own argument, however, he violates all of them, and how. You could base a drinking game on how many times he hoists himself on his own petard. Just one example: Gilley claims that colonialism had 'subjective legitimacy' because, he writes, the colonized populations generally approved of colonial powers and governance. His 'data' for this sweeping claim throughout the paper largely comes in the form of journalistic impressions and anecdotal remarks. This is not the worst of it. As others have pointed out, the most damning problem with the article is his relentless cherry-picking of benefits from colonial rule together with a complete disregard for the long-term and widespread damage colonial rule caused or the self-serving and usually racist motivations behind it. It does not take much effort to see the piece, particularly in the current US political climate, as historical revisionism in the service of white supremacy. No doubt defenders of such views will object that academia should be open to 'alternative voices' in the name of the First Amendment. But academic journals have no obligation to be open to crappy papers.

What could have been more interesting, instead of making a case for colonialism, is a critical analysis of the myriad ways former colonies grapple with the legacies of colonialism, since they are typically unable to fully embrace or reject them. Whatever 'benefits' might be attributed to colonialism cannot be disentangled from harms and violations; there are no real concepts to faithfully describe this. Tainted benefits? Abuses with an upside? When you drive the N1 out of Cape Town in South Africa, you are enjoying one of the best highways in Africa. You are also 'enjoying' the fruits of the Apartheid system, built by cheap labor, and as you drive, you can see townships where populations of non-whites were dumped and continue to experience the effects of political oppression. Reading Gilley is like hearing someone say: "Get over it. Don't you see you have a highway? So blind, so ungrateful."

Is there a link here to bioethics? I think so. Bioethics workers in developing countries are in a similarly uncomfortable position of being unable to fully reject assumptions, preoccupations and frameworks originating from the richer countries of the north, but also unable to fully embrace them without losing touch with (and being useful for) their own local context. The decolonization of bioethics in Africa, whose shape is hard to discern, will be a long work in progress.

Guest Blogger: Introducing Gaelen Snell

It has been some time since my last posting. Of course, this is not due to their being a shortage of bioethics challenges related to developing countries. There is never a shortage of that. Rather, a number of research and training projects have pulled me away from my usual late night musings. I will get back to it. Fortunately, there is also some help on the way.

Gaelen Snell is currently finishing off his Bachelor of Science degree (History and Philosophy of Science plus pre-med studies) at the University of British Columbia, Vancouver, Canada. This comes on top of his Bachelor of Art in Political Science obtained at the L'Institut d'Etudes Politiques de Paris. Gaelen has long been interested in health promotion in resource poor settings (including those located within the ‘developed world’) and is planning a career in humanitarian medicine. Gaelen will be contributing posts to this blog from time to time, as the spirit moves him.  

Welcome Gaelen!

Bioethics and its better self

Renee Fox is one of the most, if not the most, distinguished American sociologists alive. If anything, this makes the attention that she has devoted to bioethics and bioethics workers all the more surprising, because after all, how interesting or important ARE we as subjects? She clearly would not agree with my assessment. She has written a whole book on it (Observing Bioethics, with Judith Swazey), and recently published a talk entitled "Moving bioethics toward its better self: a sociologist's perspective", where she clearly and unapologetically has gone from observing bioethics to prescriptively stating what bioethicists ought to be doing. Of course, people telling bioethicists what to do is nothing new. Some make a career out of lumping all bioethicists together and lambasting them as a band of heartless utilitarians promoting a culture of death. Fox is a more astute and gentler critic. For one thing, she apparently thinks bioethics has a 'better self', and that it can be nudged in that direction.

So where does Fox think bioethics is now, such that it needs a good nudge? First, its focus is narrow, concentrating on a relatively limited set of phenomena in biology, medicine and medical technology, particularly as they relate to the beginning and end of life. In understanding the ethical issues related to these phenomenon, bioethics goes back to the well of one particular value (autonomy) over and over again, to the neglect of other values like the common good, solidarity and social justice. The comfort zone of bioethics is the individual or interpersonal level of analysis: it appeals strongly to moral imagination (because you can imagine 'what you would do' in a certain case) as well as resonating with traditional American individualism. Ascending to a more macro level of analysis -- social determinants of health and political forces impacting health but lying outside medicine -- pull bioethics more outside its comfort zone. For similar reasons, global health ethics, and appreciating other ways of how ethics is conducted around the world, are still marginalized interests within bioethics. Fox is also underwhelmed by talk of an 'empirical turn' in bioethics, arguing that the field has not yet seriously stepped outside its academic haven and embraced the lived experiences of patients, researchers, patients and their families. Worse still, what is supposed to be the bread and butter of bioethics, debate and argumentation, is shot through with timidity. In her experience, Doctors without Borders has more vigorous discussion and self-examination than your average bioethics center.

So what is the recipe for getting to a 'better self'? Fox does not spell it out, but you get the idea. Open up the range of topics as to what counts as a 'bioethics question'. Stop fixating on autonomy and make room for other values worth caring about. Get a passport, then use it. Don't skim a couple of articles from social science journals and think you now have a deep acquaintance with 'the facts'. And argue, dammit, rather than just pointing out problems and simply stating recommendations or 'points to consider'.

Fox is worried about the current state of bioethics, because she believes it has an important social function. She is not worried about bioethicists being 'evil'. She is worried that they are is self-absorbed, tepid, and ineffectual.