The next meeting of the London Bioethics Colloquium is tomorrow, Monday 7 November, 16:00-17:30 (tea available from 15.30). We are excited to have a roundtable titled “Personalisation, Privacy, Solidarity: what counts as progress in medicine?”, with three talks:
Prof Cong Yali (Professor of Medical Ethics, PKU), “Social Behaviour, Privacy Data, Ethics and Healthcare in China”
Prof. Dr. Dr. Jochen Vollmann (Ruhr-University Bochum), “Personalised medicine: Priority setting and opportunity costs at an international scale”
Dr James Wilson (UCL), “Maintaining health solidarity in an era of big data”
When: 7 November 2016, 16:00-17:30 (tea available from 15.30)
We look forward to seeing many of you on Monday!
For inquiries contact the convenors, Dr James Wilson or Dr Annette Rid: firstname.lastname@example.org
1) Social Behaviour, Privacy Data, Ethics and Healthcare in China, Prof Cong Yali (Professor of Medical Ethics, PKU)
China’s central government issued the “Health care data application development guidance” in June 2016. It encourages all kinds of medical and health institutions to promote health care data collection and storage, support operational technical system to help different stakeholders to share the health related data. Considering the wide use of apps and various sharing behavior in current China, it seems China has a bright future in the digitalization era. However, the sense of privacy protection, and social credit system are still very weak, which reminds us that there is till a long road in front of us.
This presentation will raise three key points, they are the sense of privacy protection is low generally, including those who have the electronic data, the fact is that the events of data leaking happened often. Society and the patients are more concerned about how to get access to the health service, get the registration and information from hospitals, they are not yet have able to bargain privacy protection for them. The current healthcare and insurance system in China do not yet threaten the basic life and safety due to the undeveloped insurance system and also due to the historical tradition of collective life.
Relationship addressing, instead of the individual privacy can explain this partially, but can’t be an excuse for the problem unresolved. Some strategies should be implement in parallel, including but not limited to: personnel training, policy making for data collection and use, academic discussion on the ownership of the data, and legal regulation on infringe of individual privacy.
2) Personalised medicine: Priority setting and opportunity costs at an international scale, Prof. Dr. Dr. Jochen Vollmann (Ruhr-University Bochum)
“Personalised medicine” is currently attracting considerable attention and raising high hopes and expectations in modern medicine. The term “personalised medicine” denotes the use of genetic or other biomarker information, and it does not focus on a more personal patient-doctor relationship. Furthermore, personalised medicine is associated with ethical problems like priority setting and opportunity costs in solidarity-based public health care systems. Personalised medicine provides modern, highly specific and expensive diagnostics and treatments, which serve only limited subgroups of patients. At the same time, research in other fields of clinical medicine, which could be of benefit to more patients than such limited subgroups, remain underfunded.
3) Maintaining health solidarity in an era of big data, Dr James Wilson (UCL)
Deep solidarity is easiest when each person feels that they are subject to the same risks as others. But one of the main reasons for collecting big data in healthcare is in order to stratify risk: to place individuals into different categories on the basis of their risk, and at the same time to isolate risk factors to personalise treatment regimens. As part of the drive towards better targeted therapies, health information about individuals that was previously taken to be private is being shared more widely: individuals are being asked to accept greater usage and linkage of their confidential data in order to facilitate these processes of individualisation of risk. The core challenge is how to maintain both solidarity and a commitment to the transformation of medical care through big data. I argue that the way forward is to reinterpret the idea of solidarity in the light of a robust commitment to individual rights: privacy and solidarity should be seen as interdependent in any sustainable public health care system.