Phaik Yeong Cheah: The ethics of research
Identifying and addressing ethical issues are key to the success of any clinical trials, particularly when working with vulnerable populations. Tackling these issues helps improve the quality of research and translate the evidence of clinical trials into improvement of management of patients.
Q: Why is it important that we pay attention to the ethics of research?
Phaik Yeong Cheah: In my opinion, ethical issues are inherent in clinical research.
They are very important in all aspects of clinical research: through experience of working in this area for a long time, I have found that identifying and addressing ethical issues is key to the success of any clinical trial. This helps improve the quality of trials, and in translating the evidence from clinical trials towards improving patient managment.
Q: What particularly interests you about research ethics?
PYC: Ethical principles are in my opinion universal. I work in the Thailand major overseas programme which operates in low income settings and works with vulnerable populations and neglected diseases.
Translating these supposedly universal ethical issues is an exciting challenge and I am very passionate about it. Operationalising ethical guidelines in these low income settings and vulnerable populations is very interesting and it enables good research to be done in these settings. But we have to contextualise these principles to make them practical day-to-day: when we recruit patients and we gain consent, when we talk about ancillary care etc.
Q: How has your work changed the way scientists actually do their research?
PYC: First of all, I would hope my work does change the way scientists do their work! I see work on ethics as something that is more enabling than disabling.Scientists who might have seen ethics as a hurdle now see ethics are enabling: it helps scientists who conduct research in ethically charged situations to look at their research studies in a different light, and dissect the ethical issues better.
For example, when conducting work in vulnerable populations like pregnant women, children or migrant workers, recruiting these subjects into clinical trials is challenging.
Q: What are the most important lines of research that you think have emerged in this area of the last 5-10 years?
PYC: I think the area of empirical ethics and research about community engagement in clinical trials is an important one, although there are many others. Gathering data to inform what one should do in an ethical dilemma is an interesting development in the research world. Community engagement is a new thing, as well as research into elements surrounding evaluation. And when we talk about the community: who are they? Who is the community? How do we define representatives of the community?
I have been personally involved in facilitating a community advisory board and it has been really interesting running that board. The community is on the Thai/Burmese border, which is an area where the population is mobile and moves between Thailand and Burma. Trying to understand the notion of community is an interesting concept.
Q: Why is your research important and why should we fund it?
PYC: In essence, I believe that there is not enough research in this area. In particular, research into vulnerable populations (I am talking about children, pregnant woman and other vulnerable groups) is lacking. I think that’s because people are afraid of these populations and traditionally the scientific community has tended towards the view of protecting these populations from research. The view has moved from protecting them from research to protecting them through research. With that comes a lot of ethical issues that have to be sorted out, considered, worked through and operationalised in day-to-day practice.
Q: How does your work fit in with translational medicine within the department?
PYC: I would think that it is through policies and guidelines. My work in South East Asia and more widely in low income settings has influenced policies either directly or indirectly through recommendations. This I see as very important because the international guidelines are developed in the West and to translate that to low income settings is quite a challenge. Having worked in low income settings, the data we produce on the ground feeds into these guidelines and helps researchers translate them into every day practice.