Spreading the Word about Research Bioethics

Engaging large and diverse groups of the public in discussions related to bioethics will ensure that biomedical research and related policies continue to benefit humanity.

Did you know that moral practices in medicine date back to antiquity? One the first known documented examples, the Hippocratic Oath, describes the ethical responsibilities physicians have to their patients, including the famous maxim to do no harm. However, such ethical concerns about moral standards are not confined to just medical practitioners—biomedical researchers also have a moral obligation to citizens. After all, biomedical research aims to understand the body for the benefit of society and is often publicly funded. “The public needs to have confidence that what is done in their name, and often with public resources, does indeed serve the public good,” said Dr Victor Cole, a Senior Research Fellow and Programme Director of the National University of Singapore’s Centre for Biomedical Ethics. “Equally, it is important for policy-makers and those working in the biomedical research sector to recognise the importance of the public as stakeholders.”

In 2000, the Singaporean government put these priorities into practice by establishing the Bioethics Advisory Committee (BAC) to address the ethical, legal and social issues arising from biomedical sciences research in Singapore and to act as an intermediary between the public and researchers. In the penultimate chapter of a 20th anniversary commemorative BAC publication titled “The Future of Bioethics in Singapore”1, Cole, who has hosted several events on bioethics in Singapore, discussed the importance of public engagement in the country’s bioethics landscape.

Making Bioethics Everyone’s Business

The BAC’s main missions are to educate and raise awareness of bioethics-related issues, procure feedback on views held by the public and provide recommendations to policy-makers. Counsel from the BAC has also set the groundwork for bioethics across Singapore’s booming research landscape.

The nation’s rich multiethnic population makes BAC’s work engaging the public particularly important. According to Cole, giving both minority and majority groups equal opportunity to voice their opinions paves the way for the ideal “deliberative democracy,” which places the careful weighing of options at the centre of decision-making.

In relation to biomedical research, public engagement fosters trust that could have lasting impact on new endeavours. “By building trust with its stakeholders, the biomedical research sector can generate both practical and moral support for its activities and move forward with confidence,” Cole said.

An Evolving Landscape

Bioethical concerns in Singapore, as in many countries, have followed emerging biomedical advances and their applications, said Cole. For example, in the early 2000s, human stem cell research raised questions about the sources from which those cells were obtained.

Since then, ethics concerning the use of human biological samples in research have shifted focus towards issues related to consent and the combined psychological and social implications of related technologies. These themes continue into current day, as the growth of genomics and precision medicine contributes to the debate surrounding health data privacy. One such example is precision medicine. With the aim of delivering more targeted therapeutic options to patient groups, precision medicine programmes require the genomic and health data of many individuals. However, the sharing of such health data involves much ethical consideration.

“Genomic data that is gathered from individuals to facilitate more targeted medical interventions may involve sensitive information that the individuals concerned would not want linked back to them personally,” explained Cole. According to recent studies that conducted focus groups2 and surveys 3 of Singaporeans, individuals typically weigh conflicting factors such as data security, perceived benefits and trust when considering whether to contribute their personal information. From this, Cole noted that traditional public engagement methods like focus groups could be useful strategies to gather nuanced opinions on the complex ethical issues surrounding biomedical research.

A New Generation of Engagement

Just as scientific discoveries continue to morph bioethics, Cole highlights that changes in the way we communicate will also affect how organisations like the BAC should engage the public in bioethics.  For example, the BAC has traditionally organised in-person multi-media events to engage the public in discussions related to bioethics. Cole notes that while these strategies will continue to be important in educating and engaging the public in bioethics, digital tools such as social media, blogs and online forums should be explored going forward.

Cole added that the myriad of online meeting platforms and webinars that arose out of the COVID-19 pandemic could also expand the reach of the BAC, allowing it to engage larger and more diverse groups in discussions about bioethics. According to Cole, changes in Singapore’s funding environment have also led bioethical training to become increasingly integrated with the growth of the biomedical sector. In recent years, professionals like clinician scientists have become the targets of educational efforts.

“In other words, there has been greater emphasis on building public understanding of biomedical research that is intended to have particular practical applications,” said Cole. “Bioethics as a field of inquiry has matured to the extent that it has found a more established place within the public consciousness, which I think is a sign of progress,” he concluded.

References:

1Bioethics Advisory Committee. The Future of Bioethics in Singapore. (2021) https://file.go.gov.sg/bac20thanniversarypublication.pdf

2Lysaght T., Ballantyne A., Xafis V., Ong S., Schaefer GO., et al. “Who Is Watching the Watchdog?”: Ethical Perspectives of Sharing Health-Related Data for Precision Medicine in Singapore”. BMC Medical Ethics 21, 118 (2020).

3Lysaght T., Ballantyne A., Toh HJ., Lau A., Ong S., et al. Trust and Trade-offs in Sharing Data for Precision Medicine: A National Survey of Singapore. Journal of Personalized Medicine 11, 921 (2021).