Having just completed my masters in International Research Bioethics through the School of Public Health and Preventative Medicine at Monash University (Melbourne, Australia), I was asked to share my insights on how this course would inform my advocacy work as a feminist and a health rights activist.
There is growing interest in the discipline of bioethics both among clinical and social researchers due to pressure by ethicists who want key human rights principles like confidentiality and informed consent included in research protocols to protect the autonomy and safety of patients and research subjects. However it is undoubtedly the HIV and AIDS epidemic, which led to the rolling out of large scale clinical trials in developing countries, that has sparked the emerging ethical debates around the issues of coercion, exploitation and social injustice. International research protocols, including the Helsinki Declaration, the CIOMS and UNAIDS biomedical guidelines, are being continuously challenged and revised accordingly to reflect the prevailing ethical thinking.
Can the principle of justice ever in fact be satisfied in an under-resourced health setting, when only research subjects, not the community, have access to a decent standard of HIV prevention, testing and care? A growing number of ethicists and activists now argue that as HIV prevention trials – as opposed to therapeutic – have no surrogate markers to measure a clinical endpoint other than HIV seroconversion, these trials are inherently unethical. Ethicists, including some feminist ethicists, would therefore discourage many of these trials are now focused on vaccines, pre-exposure prophylaxis medication and microbicides – from taking place. Women’s health groups have defended these trials as they argue that self-reported condom use increased significantly in several microbicides studies, and they serve as an entry point for education and prevention. But obtaining consent is a challenge in some female populations, as women in poorer countries often lack formal education and may not understand the uncertainty that exists within clinical trials.
Medical research takes place within a complex web of power relations, in which subjects- particularly subjects who are economically disadvantaged – are easily exploited because at times they rely on the clinical research to access treatment and care. Often research subjects are not in fact able to consent freely as attractive offers of money are a form of inducement, and they are left little choice but to accept.
Growing evidence of human rights violations has led progressive academics to see the need to arm health activists with knowledge into the ethical, legal and methodological issues that arise in the conduct of health and medical research in developing countries in the Asia Pacific region. Now a graduate, I am tasked with the responsibility to monitor and serve as a watchdog for vulnerable populations like women and girls, drug users and sex workers. Our belief is that before any trial takes place, a process should be set in place to determine that the research subjects are not consenting from desperation, and genuinely understand the potential risks and benefits of the clinical trials.
There is a need to strengthen accountability mechanisms through avenues for community input into decisions around the standard of care and how to manage research-related harms, including social harms. Their voices should be sought and integrated into standards of care decision-making at every stage of the trial design and implementation, including compensation and legal liability in view of unforeseen harm that may arise with newer generation products funded by sponsors of the research. There are power dynamics even within the community, and the voices of women must also be included in the decision making process.
Informed consent process should be prepared in consultation with the community advisory board and piloted within the target community to ensure gender and social sensitivity. Community participation in the form of community advisory boards and the engagement of local community representative in designing educational materials to inform the medical community and population at large can assist.
As watchdogs, we can join research ethics committees in our respective countries and also develop the capacity of communities to understand clinical research, enabling them to more fully engage in decision-making and processes related to such research.
Feminist ethics or care ethics which is rooted in women’s moral experiences has enlarged the traditional concerns of ethics both by raising the visibility of unrecognised ethical issues and introducing fresh perspectives on issues on issues already recognized as having an ethical dimension. It has become the basis for the moral and ethical arguments of the new emerging biomedical debates like surrogacy, reproductive technology, and euthanasia.
However, care ethics continues to be dominated by western women’s experiences and Asian feminists, I believe, can contribute further to the theoretical body of feminist ethics. Feminist care ethics share a similar notion of the human relationality with the Confusian “ren”. This notion is more relational where ‘self’ is viewed as essentially connected to others. The identification of the relational self as the locus of meaningful and ethical action is oriented toward assessments of inclusivity, responsiveness, sensitivity and interdependence. These values form the basis of women’s human rights and recognising that liberation is not only about changing laws but also challenging the covert male bias of existing ethical frameworks and thus changing economic systems and cultural practices.
Women’s health groups voices are now heard in discourses on the global disparities in health and now finally there appears to at least be the moral plausibility of obligation to reduce the 90:10 gap by means of health aid to address health system strengthening and institutional reform toward developing new funding mechanisms such as the Health Impact Fund. We need new innovative funding mechanism that will minimise competition for funding.
In the face that States have duty to provide care, I for one take comfort in the fact that I now have an additional advocacy tool in the revised biomedical guidance notes and documents to engage pharmaceutical multinationals and public health officials with the ethical imperative to provide health care. I believe that, as feminists, bioethics informs and strengthens our activism.
(This was written back in 2010, when Rathi was studying international research in bioethics).