Participatory​

Members of ethical committees

 

I will restrict this entry to the German National Ethics committee which includes 26 members. These members are selected to represent life sciences, medicine, theology, philosophy, ethics, social and economic affairs as well as the legal part. Members are appointed for four year terms and can be once reappointed. 

 

How is this group defined?

 

These are experts, usually at the professor level at universities, who meet once per month and hold a yearly meeting. The German Ethics Committee is dealing with all aspects of ethical concerns not just personalised medicine. Topics include anonymous baby deposits at institutions, human bio-banking, genetic diagnostics, cost-return considerations in heath care, preimplantation diagnostics, as well as dementia and self-determination. Many of these topics are relevant for personalised medicine.

 

What are the major roles of this group in personalized medicine?

 

The German Ethics Committee advises politics and defines measures of value for personalised medicine treatments. Finally, such measures are also yardsticks for the amount of reimbursement by health care providers / insurers. Distinguishing the technical possible from the ethical desirable is also a task of the German Ethics Committee. The committee serves a dual role: it is a discussion forum to shape opinions but also serves as an advisory board for ethical and legal considerations.

 

What is the major impact of this group on the development of personalized medicine?

 

The cost-return question becomes quickly relevant when treatments of life-threatening (and usually deadly) tumours are considered. Implicit is the thorny question how much monetary value is assigned to a day/month/year of prolonged life for a patient. When does the interest of the community / society prevail who simply cannot pay the most costly treatments for everybody. And when does the personal interest of the patient prevail? These are only a few of the questions pondered in the German Ethics Committee. 

 

 

Fig 32 German Ethics Committee

 

With whom has this group the most important interactions?

 

The recommendations of the German Ethics Committee influence politics and thus subsequently also the reimbursement policies of the health insurers. However, there is a multitude of local ethics committees at hospitals, churches or social institutions that all rely on the guidelines of the German Ethics Committee. In turn they also influence these guidelines by sending members to the Ethics Committee.

 

What is required of this group to further the development and application of personalized medicine?

 

Ethical and economic considerations are rarely in agreement. This creates a permanent zone of conflict for the German Ethics Committee which requires the constant negotiation of compromises of all sorts. Biomedical technology continues to open new doors and opportunities for personalised medicine. In response the Ethics Committee needs to incorporate such progress into its guidelines and recommendations. If this can be done in a timely manner, progress of personalised medicine can continue at the pace of discoveries. The Ethics committee is one of the pacemakers for the legal framework within which personalised medicine is working. 

 

 

What’s coming up next?

 

Next week I will briefly highlight the involvement of lawyers and other legal professionals, who get always involved as soon as there is a dispute to settle.

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