Dec
30

Medical Apartheid

Winner of several awards, Harriet A. Washington's "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present" (2006) documents a history we tend only to know bits and pieces of. Those familiar with ethics will be aware of the Tuskegee Study, but likely not the bigger story. This is a troubling read, but one that should be read. The book is not published by a university or academic press, and certain quotes and references are not cited, which leaves some potential interesting trails to follow as dead ends. Nonetheless, it is recommended. A few quotes of note:

  • "Use of the term race to denote biologically different types of mankind evolved only in the eighteenth century, when the study of animal breeding gave rise to heightened awareness of animal subspecies and the possibility of breeding animals to encourage desired traits. Not coincidentally, this period coincided with the growth of the slave trade, when the biological distinctiveness of men became economically important. Those who studied the different groups of men were called ethnologists and were the forerunners of anthropologists. Ethnologists applied the classification and the categorization methods of the natural sciences, called taxonomy, to the study of man. Even after the meaning of race came to include subgroupings of man, it had several meanings. By races, some meant biological subspecies of man, analogous to the different breeds of dogs. For example, Swedish natural Carl von Linne - Carolus Linnaeus, the most famous of the taxonomists – categorized Africans (and, by extension, U.S. blacks) as Homo afer, theorizing that black men had different evolutionary forebears and had evolved along a separate evolutionary track from white men." (p. 33)
  • "Sim's silver sutures did help to end a real medical tragedy for many women, and some excuse the abuse of enslaved women on this basis. This essentially utilitarian argument presents an ethical balance sheet, with the savage medical abuse of captive women on one hand and countless women saved from painful invalidism on the other. However, such an argument ignores the ethical concept of social justice, and these experiments violated this essential value because the suffering and the benefits have been distributed in an unfair way, leading to distributive injustice. In this case, the most powerless group, which is also a racially distinct group and a captive group, is the group upon which doctors inflicted harm "for the greater good." Another, privileged group enjoys the benefits but shares neither the pain nor the risks. Thus the more unexpected acceptability is clear." (p. 69)
  • "the decision not to treat these sick men of the Tuskegee Study is a different crime, a crime of omission, and it illustrates several of the important patterns explored in this book. These include the selection of blacks for the riskiest studies; their disproportionate selection for nontherapeutic experimentation; the myth of medical distinctiveness (which held that syphilis was manifested differently in blacks); and the myth of hypersexed blacks as "incorrigible" vectors of sexual disease and dysfunction. The use of men as reservoirs of syphilis reinforce the familiar use of black bodies to generate the profitable wonders of new disease approaches (to which the subjects are rare the privy), and the clinical display of disease in the clinic and in medical journals." (p. 182)
  • "The United States also chose to seek Nazi expertise. In 1945, the U.S. State Department, army intelligence, and the OSS, the immediate forerunner of the CIA, recruited former Third Reich scientist, granting them immunity, jobs, and new identities in a resettlement program for Nazi scientists. It was named Operation Paperclip, for the mode of identifying potential recruits - a simple paper clip placed on each of their dossiers. In exchange, the State Department asked that the scientist resume their old habits - working on secret nonconsensual research projects, many of which exploded patients - but this time throughout the United States." (p. 229)
  • "research into sickle cell disorder, the first identified molecular disease, remains underfunded and the disease still awaits an effective treatment, but effective genetic therapies were mounted within just a few years after the gene for cystic fibrosis was discovered in 1989. Whites are at much higher risk than blacks for cystic fibrosis." (p. 315-316)
  • "This book uses the term race because it is accepted argot, it can be a convenient, commonly used way of designating ethnic groups that are perceived as distinct. We all know what we mean (or think we do) when we denote someone's race as "black" or "white." In our nation, race is inarguably important in discussions of health and disease. However, the Human Genome Project has erased any lingering doubts: Biological race does not exist, because all humans share the same genes. Although the proportions of genes differ, meaning that genetic differences exist, these variations map very poorly on to what we think of as races. This seems to introduce a logical contradiction: If race is not real, how can we speak of race-based therapeutics? The answer is that race is real, but it is not biological: It is social. What correlates very closely to most "racial" differences ns life expectancy, mortality, disease susceptibility, and survival is the race to which one is perceived as belonging." (p. 317)
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Dec
19

Getting to Zero: On the Ebola Frontline

  • "It seems very hard to stop this now, but I think we all just have to believe that it is possible." (Norwegian epidemiologist, p. xvii)

Within development studies literature there is a sub-genre of memoires, biographies and dairies. Some are troubling to read. Not all are well written. Some are extremely informative. Most present aspects of the sector that are invisible for those outside of it. Daily routines. Successes and failures. Lessons. Lived experiences. I enjoy reading these works. "Getting to Zero: A Doctor and a Diplomat on the Ebola Frontline" (2018) by Sinead Walsh and Oliver Johnson falls in this sub-genre and is well worth a read. The book is quite long (422 pages), so I will not attempt a summary. Rather, a few parts that I think are worth sharing:

On training: "The second problem with Ebola trainings was that they fell into the 'training the trainers' trap, another common fault of aid programmes. The logic here was that an expert, often an international consultant flown in for the task, could provide a brief training to a selection of local staff brought together from across the country. These staff would then 'cascade' this training to their colleagues after returning home. Whilst this may be effective in some specific situations, generally a few hours or a few days of classroom-based teaching simply does not give someone enough knowledge or hands-on experience of a complex real-world challenge for them to be able to undertake it independently or teach it to others" (p. 52).

Learning in emergencies: "Key to any process of community engagement is respect. This meant being willing to sit down, listen, and then have a conversation with communities to find compromises between our preferred biomedical strategies and what they felt they could actually do. It took us a long time to get to that. Much of the community engagement in the early months was one-way, telling people what to do rather than understanding the kinds of challenges they faced and what ideas they had for how to protect themselves." (p. 343)

On roles within humanitarian and development activity: "the question of how assertive to be in a situation like this is at the core of the distinction between development and humanitarian approaches to international aid. The development mindset tends to focus on supporting the country to better serve its population over the long term, and therefore recognizes the importance of being led by the government. After all, it is the government that (usually) has the democratic legitimacy to make decisions about the country's future and is therefore best placed to run the services that aid agencies are looking to strengthen. Mutual respect and a collaborative relationship between the government and the aid agency are key in this kind of approach. As a result, timelines are usually slower than if aid agencies implement services directly. A humanitarian approach can sometimes appear to be the exact opposite. The focus in an emergency situation is not on long-term improvements to government systems but on immediate relief for those in need. There is a strong sense of urgency, and aid agencies will sometimes take control, with only a token consultation with the government, so that rapid decisions can be made. Humanitarian budgets can be quite large, allowing the swift hiring of additional staff and the bringing in of supplies for the short-term effort." (p. 66-67)

Pointing fingers: "Paul Farmer has written extensively about the tendency of people in the aid system to over-focus on weak accountability in developing countries, rather than questioning the role of developed countries, either today or historically. This is both about weak accountability within their international aid systems and about how they often contribute to corruption in developing countries." (p. 361)

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Sep
20

Ebola: How a People’s Science Helped End an Epidemic

As other reviewers of this book have mentioned, there is probably few who are better suited to write this book than Paul Richards, with such a depth of knowledge and experience of the areas where the epidemic occurred. In "Ebola: How a People's Science Helped End an Epidemic" (2016) the author argues that faced "with the realities of the disease the common folk learnt to think like epidemiologists. As interestingly, epidemiologists began to think like the common folk. Merged understanding was crucial to epidemic control" (p. 4). Throughout, the author makes a case that 'citizen science' enabled individuals and communities to respond effectively, in difficult and resource-constrained situation, to help end the Ebola epidemic.

At least in my reading, the case for a people's science helping to end the Ebola epidemic was not convincingly made. Unless, one considers all forms of responses (i.e. requesting protective materials, finding alternatives when materials were in short supply, practicing quarantine) as 'citizen science'. There may be more to Richard's story of citizen science (alluded in the Kailahun District example of declining infections before any major international response, but the book focuses upon the actions of a medically-trained individual leader, less on citizen science). I suppose the definition of citizen science is my main divergence with the author's argument – as my own experience and understanding of 'citizen science' is somewhat different. Examples (from the 'global South') of participatory budgetary monitoring to ensure accountability and community-based counter mapping to advocate for land rights come to mind. Enforcing quarantine is a form of thinking like an epidemiologist, but this also assumes a low level of pre-existing knowledge – one might alternatively view this as an expected response to an epidemic based on historical experience with different diseases.

What I thought this book did well, on the other hand, was make a case for the importance of detailed, ethnographic research. He writes:

"Social mobilization was needed to create an environment in which biosafety control measure would be accepted and enhanced. Was there expertise to address these kind of social challenges? The social sciences are less strongly supported relative to other areas of scientific knowledge formation globally, but especially in Africa, where sometimes politicians equate social investigation with political opposition. Much necessary social knowledge is locked up in the heads and practices of people in communities, and remains largely undocumented. Perhaps nowhere was this more true (as pointed out above) than in the case of burial. How, then, given the dearth of documented, evidence-based information, was a social response to Ebola to be organized?" (p. 122)

For those interested in better understanding the Ebola epidemic, this is an excellent read. For those keen to learn about bottom-up citizen science, this might not be the best place to look.

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Sep
16

Post-doc: Rural Health

Summary of Research: The Rural Dementia Action Research (RaDAR) team is seeking applications for a postdoctoral research fellowship in the area of rural health service delivery for individuals with dementia and their caregivers, with a focus on primary health care. The interdisciplinary RaDAR team is based at the U of Sask, with members in four provinces and the UK. The proposed research is linked to the CIHR Canadian Consortium on Neurodegeneration in Aging.

Qualifications: At minimum, candidates will hold a recent PhD (less than 3 years) in a health discipline, psychology, community health and epidemiology, public policy, public health, or related discipline. The successful candidate must also have experience with grantsmanship and manuscript preparation, and a demonstrated ability to work with other researchers, support personnel, and students in a collaborative research environment. Candidates must possess strong organizational, communication, and interpersonal skills. Strong written and oral English communication skills are required.

Ideally the candidate will have background/experience in dementia research. It would be an asset for the candidate to have experience in rural health delivery issues, program evaluation, quality improvement, integrated knowledge translation and exchange, participatory research methods, implementation methods, and primary health care. The intent of this position is to build capacity in rural health service delivery for individuals with dementia and to support development of a career path in this area.

Conditions: The position is available immediately. Initial appointment is for one year at first, with possible renewal for another 1-2 years upon mutual satisfaction and funding availability. The suggested salary is $45,000 CDN with $5,000 research and travel allowance. Candidates are required to present their research at relevant local and international conferences and other venues as appropriate. Because the recipient is a trainee and not an employee of the University of Saskatchewan, the recipient is not entitled to employment benefits. Deductions for Canadian income tax will be made from the monthly stipend, but the stipend is not subject to source deductions for Employment Insurance or Canada Pension Plan.

Close date: Applications will be reviewed as they are received, until the position is filled. Only those selected to be interviewed will be notified.

More details.

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