Trust in healthcare and science

Excerpt

Trust is generally regarded as a basic concept in healthcare and science. Without trust, physicians will not be able to provide for their patients. Scientists will no longer be supported when they have lost the trust of the general public. If scientific publications are no longer reliable, for example because they have been ghost-written or published in predatory journals, the readership will lose confidence in the data produced by researchers. The journal issue at hand includes several contributions related to trust. Research projects, especially large-scale initiatives at national and regional levels, will only be effective if they can build on public trust. Such trust will be obtained if emphasis is put on ethics and ethical governance. Samuel and Farsidis (2018) discuss the ‘genomic dream’ in the United Kingdom of integrating genomics in all aspects of the National Health Service (NHS). This dream can only be realized if the ethical aspects are seriously taken into account. The promoters of the project strongly displayed ethical concerns on the website and in public events. An Ethics Advisory Board Committee was established, and a bioethicist was invited to sit on the Board of the project. This emphasis on ethics was intended to assure the public that ethics was taken into account in decision-making procedures and governance, and that therefore the project could be trusted. Samuel and Farsidis ask the critical question whether this focus on ethics is more strategic than substantial. Being perceived as ethical is not the same as being ethical. Interviewing participants in the project showed that they do not want to appear ethical but also want to act ethically. They also clarified a disconnect between the public presentation of the project and the actual discussions with patients. The project website, for example, gave prominence to ethical concerns of privacy and commercial interaction, while from the patient perspective concerns with health benefits were more prominent. The implication is that public trust apparently has two components. One is the need of projects to be viewed as ethical. This is the external guarantee for trust. It emphasizes procedures and mechanism such as the existence of an ethics committee, and the attention paid to well-known concerns of privacy and conflict of interest. The other component, however, is an internal one, demonstrating that in practice there will be ongoing discussions between people involved in the project; these discussions will be iterative since practices are uncertain and messy. Samuel and Farsidis rightly point out that there are certain limits to this internal ethics. The ethical presuppositions, the moral worth and scientific validity of the project itself cannot be questioned. When the project has been launched, certain ethical presuppositions need to be taken for granted. This is of course an important lesson for the issue of trust. If the importance and the appropriateness of a project cannot be questioned, the public is asked to trust the prior decision-making process. How have decisions been made to incorporate genomics into the NHS? Such decisions are often political and not necessarily open to ethical scrutiny. …