Experts and scholars from Stanford University, the University of Bergen, Peking University, the Chinese Academy of Sciences, Peking Union Medical College, and Fudan University recently attended a workshop titled, “Precision Medicine: Ethical, Legal and Social Issues,” which was jointly hosted in Beijing by the Berggruen China Center, Peking University and the research group on “Ethical and Social Issues in Personalized Medicine,” which is a project under the National Social Science Fund of China led by Chen Haidan, a tenured associate professor in the School of Medical Humanities at Peking University.
Attendees conducted in-depth exchanges on ethical, legal, and social issues in advanced life sciences, such as precision medicine.
Professor David Magnus, director of the Stanford Center for Biomedical Ethics, discussed the major challenges and opportunities for the secondary application of clinical data in his keynote speech, “Who owns and controls patient data in the age of artificial intelligence?” In the keynote he argued that privacy, data management, and scientific development are all important, and therefore a model is needed for managing this data as a public good in order to strike a balance between patient protection and scientific development.
Professor Cong Yali from the School of Medical Humanities at Peking University, delivered a report on the issue of equality in precision medicine. She explored issues in both the research and practice of precision medicine, querying which aspects exacerbate the problem of health inequality, which aspects may ease inequality, and which new areas could generate equality-related issues.
Pang Cong, a PhD candidate in the School of Philosophy at Fudan University, pointed out in her report some of the challenges around autonomous informed consent obtained in the context of precision medicine. She also reaffirmed the goal of activities pertaining to informed consent, namely to respect the person rather than respect autonomy, and discussed how to achieve this goal in clinical, research, and business environments.
Associate Professor Chen Haidan from the School of Medical Humanities at Peking University, after conducting in-depth interviews with patients involved with the breast cancer gene testing database, commented that the Chinese perception of privacy is far more complex and pluralistic than traditional views. The privacy paradox and institutional trust might explain why these patients are willing to participate in the genetic database. Therefore, strengthening privacy protection is essential for the public and patients to support a biological sample library.
Through a systematic literature analysis, Li Xiaojie, a postdoctoral candidate in the School of Medical Humanities at Peking University, found five major ethical challenges hindering the sharing of clinical data in China, namely capacity-building, equitable distribution of benefits and burdens, scientific and social values, rights of data subjects, and public trust and participation. Li Xiaojie suggested that government agencies need to find a balance between privacy protection and data sharing.
Peng Yaojin, an associate researcher at the Institute of Zoology, Chinese Academy of Sciences, explored in his report China’s regulatory system for heritable genome editing before and after the “Gene-Edited Babies” incident (a Chinese researcher claimed responsibility for the first gene-edited babies on November 26, 2018). His report proposed a model for a more effective regulatory system in the future on the basis of a comparison with other countries’ regulations.
Zhang Di, a lecturer in the School of Humanities and Social Sciences at Peking Union Medical College, pointed out that the “Gene-Edited Babies” represented a failure of governance in heritable genome editing in China. He analyzed governance loopholes in the five realms of law, oversight, public participation, institutions, and the scientific community, and presented 12 suggestions for China’s ethical governance in addressing these issues.