When we examine the progress of medical science, we tend to focus on the good – the myriad ways in which innovative drugs, tools, and procedures have prolonged and improved lives. But this history has a dark side. Medical research has been overwhelmingly racist and sexist. It has been built upon slavery and colonisation. All too often, it has been utterly inhumane.
In The Birth of American Gynecology, Deirdre Cooper Owens notes that, in slavery, just as value was extracted from healthy black bodies (in the form of labour), it was also extracted from sick and deceased black bodies – particularly black women’s bodies – through medical research. Doctors often used the reproductive organs of black cadavers to facilitate their research and educate others.
Living black women were not spared. Doctors conducted experiments on them and used them to practice surgical techniques. J Marion Sims’ experiments on enslaved women laid the groundwork for modern gynecology. While the results of Sims’ unethical experiments ultimately helped countless women (and made him very famous), it would be decades before black women would have access to them.
From the Tuskegee Study of Untreated Syphilis in the Negro Male to the non-consensual removal of cells from Henrietta Lacks, examples of unethical medical research abound – many more cases surely have not been exposed. But there has been little accountability.
More broadly, the ways in which structural racism and sexism fuel health inequities remain under-studied, though it is clear that their impact is substantial. The HIV/Aids pandemic is a case in point.
Given that the victims were disproportionately homosexuals, intravenous drug users, women, black people and people in the Global South, the response to the HIV/Aids crisis was weak, at best. Political leaders, from then-US President Ronald Reagan to then-President Thabo Mbeki, often engaged in moralising, denial, stigmatisation and even ridicule rather than fulfilling their obligation to uphold the right of all people, especially vulnerable or marginalised groups, to access health facilities, goods, and services on a non-discriminatory basis.
Eventually, effective antiretroviral treatments became available to an increasing share of HIV/Aids patients. And yet, to this day, nearly one million people die of HIV/Aids each year, mostly in sub-Saharan Africa.
The Covid-19 crisis has shown just how little the world has learned from its grotesque history of medical inequities. In the US, the percentage of Hispanic or Latino, non-Hispanic black, and non-Hispanic American Indian or Alaska Native people who have died from Covid-19 is higher than the percentage of these racial and ethnic groups among the total population. And widespread vaccine nationalism means that people in the Global South will have to wait much longer than their rich-country counterparts to receive vaccinations.
The problem of power
The problem comes down to power. Those who carried out unethical experiments on enslaved people or failed to help HIV/Aids sufferers generally came from the same groups that hold the most power today. And the victims of their actions and failures largely came from groups that remain marginalised and under-represented in decision-making processes.
The only way to transform the system, therefore, is to empower those who are systemically disempowered. That means, first and foremost, ensuring that all those who seek healthcare are equipped with clear, understandable, evidence-based information.
For starters, public-health messaging should be translated into all relevant languages, thereby enabling people of all backgrounds to understand the issues fully and communicate their needs and concerns to health-care providers and government representatives. This would go a long way toward fostering trust.
But rote translation is only the first step. As the World Health Organisation (WHO) has pointed out, consideration of context – “the social, economic, political and cultural factors influencing people’s perception of risk and their risk-reduction behaviours” – is also essential.
Consider vaccine hesitancy during the Covid-19 pandemic. Given the history of medical experimentation on non-consenting black Americans, overcoming vaccine hesitancy among this group would require different approaches than for white Americans, whose hesitancy may be religiously or politically motivated. As Thomas R Oliver of the University of Wisconsin-Madison wrote in 2006, “Politics affects how individuals view public-health problems, how problems are discussed and what solutions are developed to advance public health.”
During a pandemic, such factors can have devastating effects. They create fertile ground for mistrust and confusion, undermining people’s willingness or ability to act in their and their community’s best interests.
Getting it right
There are a few examples of successful communication during the Covid-19 pandemic. New Zealand has been widely – and rightly – lauded for its response, in which political leaders heeded the advice of public-health experts, amplified evidence-based information, and kept messaging clear and transparent.
Empowering those who seek healthcare will also require targeted training for providers. Racism, sexism, and stigmatisation are well documented among healthcare providers. Overcoming them will require ongoing professional training centred on human rights.
The right to health is broad, defined by the UN as “extending not only to timely and appropriate healthcare, but also to the underlying determinants of health,” including “access to health-related education and information, including on sexual and reproductive health.” And, in fact, a rights-based approach to sexual and reproductive health has, according to the WHO, led to a “a rapid increase in the documentation and understanding of the nature of discrimination and inequality.”
The right to health includes both freedoms and entitlements. All people must have the freedom to make decisions about their own health, and they are entitled to the tools required to ensure that their decisions are well informed and can be realised. That means disseminating authoritative information that takes into account linguistic needs and cultural contexts. It means delivering universal access to high-quality healthcare services, including essential medicines. And it means making anti-racism, anti-sexism, and decolonisation central to all facets of public-health decision-making.
We cannot change the history of the medical sciences and health care. But we can – and therefore must – change the future. — © Project Syndicate