changes of company status and operations (e.g.. mergers, acquisitions, spin-off). All
these questions currently float in a legal vacuum. The possible resolution may lie in
combining old and new paradigms and approaches to this problem. Current para-
digm is experience based, reactive, disease and treatment oriented, as well as
dependent on medical professionals.^31 This is fundamentally different from the
new paradigm, which is information based, proactive, and consumer oriented.
Instead of genetic care emphasis on rare disease, the new paradigm focuses on
common disease and -omic care.^32
The new, information-based, consumer-oriented paradigm opens up numerous
issues regarding, among others, collection and processing of sensitive personal
data. Actually, due to “specificity” of each individual and concentration of collected
sensitive data about him in one place, sooner or later each client or proband risks
turning into a “citizen of glass.” New technologies enable various new tests, thus
bringing medical advantages, but the classical legal protection (regarding the
protection of personal data, right to privacy, access to test results, etc.) is lagging
behind, and legislators should search and be able to provide sophisticated new
solutions.
The above reveals the problem of “nakedness” of individuals, whether as
patients, probands, or citizens. This term is in sociology known as “singling out”
of humans in society, and this phenomenon is even more pronounced in light of the
new technologies.
Another question arising in connection therewith concerns potential discrimina-
tion and stigmatization of persons with genetical predisposition for illness.^33
The authors fear that economic impacts and issues regarding the reduction of
health care costs and introduction of personal responsibility of what are nowadays
“citizens of glass” will lead to desolidarization of compulsory health insurance
systems.^34 This seems to be recognized in an opinion of the German Bundestag: the
emphasis on establishing individual illness risks and personal responsibility of
patients in personalized medicine opens up questions regarding the recognition of
individual illness risks when determining the amount of contribution and scope of
benefits provided under the health care scheme.^35
(^31) Li ( 2011 ), p. 412.
(^32) Li ( 2011 ), p. 412.
(^33) See Kollek et al. ( 2004 ), p. 138: “Once obtained, they [i.e. data] stick to the individuals their
entire life” (authors’translation from German).
(^34) Taupitz ( 2011 ), p. 225.
(^35) Deutscher Bundestag ( 2009 ), pp. 14 and 148.
38 N. Bodiroga-Vukobrat and H. Horak