Anyone who has been for a routine mammogram might have thought to themselves that there is no way a woman invented the exam (and they would be right—it was Uruguayan physician Raul Leborgne [1907–1986] who discovered in the 1950s that compressing the breast tissue generated a better diagnostic image). The procedure saves lives, but there must surely be a less aggressive technique? Active participation from women, who are the end users, after all, could help improve aspects such as comfort in the development of alternatives.
Such interactions between medical researchers and patients already occur in clinical trials, for example, but they are highly restricted. However, a methodology known as citizen medicine, which promotes more open and inclusive collaboration, recognizing that the patient has in-depth knowledge of their own condition, is growing in popularity. The report shows that there is room for greater patient involvement, including on ethics committees, participating in clinical trial regulation, determining acceptable risk levels for testing new drugs, and other possibilities. It is not always feasible nor is it an easy option. Bringing together people with different perspectives and experiences is a challenge, but it is one that can result in innovative research.
The idea of citizen medicine—an offshoot of citizen science, which we covered in issue 323—also has points of convergence with the investigation and incorporation of Indigenous knowledge of diseases by non-Indigenous society. By building bridges between different types of knowledge, we can broaden our perspectives of illness and ensure Indigenous peoples are given access to healthcare that respects their cultures and ways of life. Another report in this vein describes the fact that members of the LGBT+ community tend to undergo fewer preventive exams than heterosexual cisgender individuals.
Inclusion is the subject of this issue’s cover story. Brazil is home to more than 17 million people with some form of disability, according to recent IBGE data, and there has been progress in indicators such as the number of students with disabilities enrolled in basic and higher education. But there is a long way to go to reduce the gap between people with and without disabilities in terms of access to education and the job market, as well as when it comes to income.
In recent years, Brazilian legislation on the subject has been expanded and updated, supported by the UN’s 2006 Convention on the Rights of Persons with Disabilities. The growing presence of this population at universities has led to advances in scientific knowledge, opening new research fronts and stimulating institutional improvements. Innovations in equipment and services for this audience are the subject of a supplementary report on page 20.
This issue also marks an important event: EMBRAPA’s 50th anniversary. The Brazilian Agricultural Research Corporation, which has branches in every Brazilian state, is largely responsible for the country’s agricultural diversity and its position as a food exporter. But modern times, with the worrying developments of climate change and new demands from consumer markets, call for a greater focus on sustainable agriculture, a topic to which the institution has been dedicating much attention.
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