Ethical Challenges in personalized Genomics

Friday, 16. September 2011 | 10:00 Uhr


Effy Vayena


University Zurich


Dr. Effy Vayena, University of Zurich, stressed in her presentation that personalized medicine has to respect ethical principles and values. Self-determination, for example, is a very important principle. However, it depends on the quality of information patients receive. In this context, the role of gatekeepers, for example the doctor, is crucial. Self-determination is critical in minors. When it comes to the criterion of risks and benefits, we have to make a clear distinction between the effects for individuals and the effects for society. For her, the results of this analysis are worrying as the benefits are not really demonstrated. Further data is needed – also from other cultures. Until now, data has been collected mainly in the United States. Vayena pointed out that discrimination based on DNA analysis is possible making personalized medicine controversial from an ethical point of view. People are confused and do not know whether data protection and privacy will be guaranteed. A hospital, for example, published patient data on the Internet by mistake during one year. A further question is: Who can afford personalized medicine? There is a discrepancy because only 10% of the money used for research is used for treatments of 90% of the poorest population of the world. In her summary, Vayena clearly pointed out that genetic research will inevitably lead to a conflict with ethical principles. Therefore, there is an urgent need to include ethical aspects in the process.

Effy Vayena

Effy Vayena studied history of medicine, public health and bioethics at the Universities of Athens, London, Minnesota and Harvard. From 2000-2007 she was a Technical Officer at the World Health Organization WHO) where she worked on issues of reproductive health, clinical research ethics, equity and research capacity building in developing countries.

She also served as a reviewer at the WHO’s Ethics Review Committee. She is currently a senior fellow and the academic coordinator of the PhD program in Biomedical Ethics and Law at the Institute of Biomedical Ethics, University of Zurich. Her current research interests include ethics in reproductive health and assisted reproduction, research ethics, biobanking, ethics of electronic health information, and personalized genomics.

She teaches research ethics at graduate programs in the University of Zurich and she is a consultant at the World Health Organization. Her articles have been published by PLoS Medicine, Fertility and Sterility and EMBO while she has contributed chapters in several edited volumes. Her latest work on ethical issues in intra-family donation and donor recruitment will appear in 2012 in an edited volume published by the Cambridge University Press.

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