Exploring the Ethics of Precision Medicine Research
For bioethics researcher Tamra Lysaght, proactive responses to public concerns about precision medicine could help encourage acceptance and participation in national programmes.
Imagine you are inside a runaway trolley that is barrelling towards five people tied to the tracks ahead. Thankfully, you notice a lever which, if pulled, can divert the trolley to another track, saving the group. The catch is that a single person is tied to that second set of tracks. So what do you do: stay on the first track or pull the lever?
This iconic trolley problem is a thought experiment often posed to medical students to ready them for the moral decisions they may face as physicians, such as weighing a patient’s preferences against their welfare. Besides the ethical norms for practicing physicians, a consideration of ethics is also essential for data-driven initiatives like precision medicine.
Precision medicine harnesses the clinical, biological and genomic data of large numbers of people to deliver better care and diagnosis for patients. Consequently, understanding the ethical issues surrounding precision medicine research, especially as perceived by the public, can elevate research and participation in initiatives like Singapore’s National Precision Medicine Programme. Unveiling the ethics surrounding precision medicine is a key focus of work by Assistant Professor Tamra Lysaght, Director of Research and Phase Director of the Health Ethics, Law and Professionalism programme at the Centre for Biomedical Ethics at the Yong Loo Lin School of Medicine, National University of Singapore. Here, she discusses her research exploring the ethical aspects of precision medicine in Asia as well as how governments can gain widespread trust and acceptance of national programmes.
1. What sparked your interest in biomedical ethics?
When I was doing my degree in biotechnology, I had to do a compulsory bioethics course. I found it fascinating because it wasn’t talking about what we can do with science, but what we should do. I then did an empirical research project examining the need and demands for ethics education in the undergraduate biotechnology science curriculum. As part of that research, I interviewed managers or potential employers of biotech graduates.
Two of my interviewees were leading a new institute called the National Stem Cell Centre with funding from the federal government and they encouraged me to apply for their postgraduate scholarship program once I had finished my undergraduate studies. I did so and was awarded a scholarship to examine the science policy and ethical issues surrounding stem cell research at the University of Sydney, which evolved into my doctoral thesis.
Upon obtaining my PhD, I moved to Singapore to take up postdoctoral studies at the NUS Centre for Biomedical Ethics and began collaborating with the scientific community at the
Agency for Science, Technology and Research’s (A*STAR) Genome Institute of Singapore (GIS), which at the time was led by Prof Edison Lui. GIS is now under the leadership of Prof Patrick Tan, who is also the Executive Director of PRECISE.
2. Your research has explored ethical aspects from religious perspectives to perceptions of the terms used in precision medicine. Are there any other questions you hopes to address?
I hope to understand more about the social and moral boundaries for using precision medicine data, the sort of research that falls within those boundaries and importantly, what falls outside those moral boundaries. This is because any research that extends beyond what society considers morally acceptable may be subject to public backlash and widespread loss of support.
The problem with emerging scientific topics like precision medicine is that the moral boundaries of what research is acceptable are usually not obvious until the lines are breached. Investigating where these boundaries are can help the scientific community proactively establish self-governing mechanisms to avoid falling short of them.
While our research has identified some of the key structures governing the use of precision medicine data that should be put in place, our results are still fairly broad. They do not tell us much about what type of research people in Singapore will be comfortable or uncomfortable with, which is why I am keen to further explore this line of research.
All these are the basics of what needs to be put in place to establish a social licence.
3. What is a social licence and why is it important?
Having a social licence means that society has granted an organisation or profession to operate or practice in privileged ways that others are not. For precision medicine, it means having societal support to operate under a ‘broad consent regime,’ where people consent once to being part of the programme or cohort and then trust that their information will be kept secure and accessed only under certain agreed conditions. Those conditions form part of the social license or agreement with society that, if breached, may result in loss of trust and support for the programme. Therefore, establishing a social license will require a much more fine-grained look at what precision medicine research purposes are acceptable, and which are not.
4. What has your research revealed about Asia-specific cultural perceptions on precision medicine?
I’m always reluctant to engage in broad stroke generalisations about a region where three billion people live. I think it’s important to be specific about what part of Asia we are discussing. Different countries with their own unique cultural traditions, genetic lineages and historical and political structures can influence the way people engage with science. Having said that, I have noticed something unique in Singapore that I haven’t seen in research from the US or parts of Europe, and that is a very high level of trust in government. This is particularly true for the Ministry of Health, which we found was the most trusted agency for storing and using precision medicine data. We don’t know whether this is particular to Singapore or something more general about Asian cultures, and it would be interesting to explore in future studies.
5. Given that the success of precision medicine relies on population-wide data collection, what can national precision medicine programmes do to gain widespread trust and acceptance from the public?
I think you must have the basics, such as ensuring the highest levels of data security are in place, and that there are processes to minimise any kind of harm when there is a security breach. Keeping these factors in mind, I think there needs to be very clear communication about the benefits of these precision medicine research programmes, because the benefits may not be immediately obvious to most lay people. In the longer term, to get as many people on board as possible, programmes need to show and demonstrate what the benefits are and ensure that they are publicly accessible, and that they do not systematically disadvantage minority groups. If people sign up to precision medicine programmes, it’s more than likely that they’re investing trust in the institution that’s asking them to do so.