A Lawyer’s Contribution to Scientific Research: The Link Between Universal Human Rights and Studying Healthcare
Healthcare in Canada is a public concern, governed by acts, statutes, and regulations. Canadians value healthcare as a fundamental human right, as reflected by the sentiments of the Canadian Health Act (CHA) with the promise of facilitating reasonable access to health services without barriers.
The question is, what is meant by reasonable? Who, if anyone, is excluded from having these services on the grounds that their specific, neglected diseases or rare illnesses require more treatment than what the government considers to be reasonable? What types of research would be considered as promoting reasonable healthcare, and are the separate scientific gaps of translation or innovation considered barriers to healthcare?
The translational gap or Valley of Death is the space between public health knowledge produced by primary research published in peer-reviewed articles, and the actual application of that research into hospitals and specialized medical offices. Issues that contribute to this gap include the private funding of and control over clinical trials, as well as the ethical issues concerning trial participants. To address some of these issues, the Canadian Institutes of Health Research (CIHR) has created the Strategy for Patient-Oriented Research (SPOR), which provides some funding to help advance treatments that are in their early stages of research and development, prior to commercialization. Adding to this effort, associations like the Royal College of Physicians and Surgeons of Canada have also shown support for the involvement of clinician scientists. As both clinicians and researchers, clinician scientists are important in translating health-related discoveries to final products for the specific patient populations, helping to form the bridge over the symbolic Valley of Death.
The modern commercialization of scientific research can be profitable and, therefore, creates the consequence of potentially motivating companies to only pursue research that will ultimately have a lucrative result. This impacts healthcare and available treatments in the long run by contributing to the innovation gap.
The innovation gap refers to the unequal focus of research on specific diseases for which the treatments have more commercial potential, rather than for diseases that need treatments, but may not translate into profit for pharmaceutical companies. These neglected diseases are often prevalent in developing and tropical countries. For instance, according to the World Health Organization (WHO), African trypanosomiasis (sleeping sickness), or Dracunculiasis (caused by drinking water contaminated by guinea-worms) are considered to be neglected diseases. In contrast, orphan diseases like Huntington’s, mesothelioma, or muscular dystrophies can be found in Western countries, but affect a small population. According to the Canadian Organization for Rare Disorders, approximately one in twelve Canadians are affected by some sort of rare disorder, but these individuals do not all have the same type of orphan disease, and there is a growing number of new disorders being diagnosed.
Although the prevention of some of these (mainly tropical) diseases may be effectively treated and reduced in prevalence with government initiatives to help create sanitary environments, public health measures are not always affordable for the affected populations or implemented when required. In addition, while Western countries may have the resources to contribute funding to these causes, privatized research on treatments for diseases that are both located in Western countries and more common are prioritized instead, due to the financial motivations of pharmaceutical companies. For private industry, neglected or rare diseases may not always be worth investing in.
To address these problems, human rights law can be helpful. Canada is bound by international law, and arguably, the CIHR may also be bound by extension. The provisions of the CHA are similar to the statements declared in the 1948 Universal Declaration of Human Rights, namely that there is a right to have an adequate level of health. Social determinants of health also play a significant role in defining population and individual health over the lifespan, but the unequal focus of research can also have an effect. For instance, the lack of research being done on neglected or orphan diseases in the first place may also contribute to inadequate healthcare that is unable to meet the needs the population served.
The CIHR has funded some studies on tropical diseases such as Leishmania and Chagas. There are also various organizations that actively promote international healthcare, including Canada’s International Development Research Council and the Canadian Collaborative for Global Health Research, among others. The CIHR also has Global Health Initiatives, which encompass studies on chronic diseases, studies conducted in other countries, and climate change adaptation methods. However, there is always room for improvement, and these global projects are limited in focus.
http://www.cihr-irsc.gc.ca/e/37788.html – accessed Feb. 26, 2017
As of 2017, the structure of the CIHR has shifted under the Trudeau government from focusing only on improving the efficacy of translational studies and industry-driven research to basic fundamental or investigator/curiosity-driven science (in other words, non-commercial research) to promote the ability to innovate. We should take advantage of this shift by encouraging individual researchers and their teams to propose projects on neglected or rare diseases as part of the investigator-initiated research share. Alternatively, the study of these diseases could be categorized as a dedicated Global Health Initiative. In addition, it would be helpful to have a section of SPOR dedicated to domestic and rare illness. The ultimate goal is to bridge the innovation gap by studying remedies for diseases that do not receive proper attention, and move one step further by bridging the translational gap.
The administration of medicine to those who need it will be tricky depending on barriers, including the relationships between countries or the political and economic stability of nations. Despite this, the first steps to take are to attain, and make practical use of, more knowledge about neglected and rare diseases. The Public Health Agency of Canada has worked with the WHO significantly on the Ebola outbreak in West Africa and Ontario has recently strengthened their commitment to treat rare diseases. Perhaps incentivizing this type of focused research would contribute to Canada’s involvement in the effort to help reduce the prevalence of, or eradicate, neglected or orphan diseases. As further motivation, Canadians should be aware that the transfer of diseases across borders is always a possibility given the global interactions of international populations and the Canadian economy. Ideally, though, the fundamental value for the lives of others should be the central motivation of this objective.
How does scientific research relate to law? The relationship between research and defending basic human rights is central to the lawyer’s role. By encouraging the protection of the right to health, both domestically and internationally, lawyers can help stimulate obtaining scientific knowledge. Considering healthcare within the realm of constitutional law, which has been discussed in cases like Chaoulli v Quebec  and forthcoming, Cambie Surgical Centre et al. v Medical Services Commission et al., can also serve to the benefit of Canadians who see healthcare as fundamentally connected to the right to life, no matter what the genetic predisposition of that life is. Hopefully healthcare will soon be relevant in this manner, with growing support similar to environmental law issues of Juliana et al. v United States et al. (youth arguing that government contribution to pollution violated their right to life, liberty and property). Thinking about these healthcare and research issues creates a starting ground to tackling problems which could potentially arise in human rights litigation.