in the course of their lives and therefore will have to deal with information in the
genetic hereditary property.
Let me give you an example that is taken from a case study that has been
modeled and calculated through by the economists in the framework of our
before-mentioned interdisciplinary project.^27 For some variants of colorectal can-
cer, we know that a specific genetic predisposition can lead to the outbreak of the
disease. If persons who have already felt ill were tested, those with the said genetic
predisposition could be identified. And if, in a second step, it was also possible to
identify the close relatives of these index persons, the relatives could undergo a
testing procedure, and in case they also showed the same genetic predisposition,
measures could take place preventing the relatives from falling ill. The costs of this
preventive personalized medicine vary according to the testing procedure. Yet the
overall cost-benefit analysis shows that its efficiency depends mainly on the con-
dition that it is possible to identify more than one relative in average. This leads to
the first question whether those suffering from the particular variant of colorectal
cancer can be subject to the obligation to undergo testing.^28 The second question is
under what circumstances they might be obliged to disclose information about the
names of their relatives.^29 And the third question is whether these relatives have a
right to not be informed, a right to ignorance, or a right not to know about their
genetic predisposition.^30 All three questions are highly relevant but sometimes
difficult to answer from a legal point of view, and they might gain more attention
in the foreseeable future.
As far as further research is concerned, the information collected in the course of
medical treatments has to be stored in order to allow for new examinations in the
future as we have to assume that our knowledge will keep on increasing. Both the
right to research^31 and the right to privacy^32 have to be considered in order to shape
a consistent, open, and appropriate legal basis for the so-called biobanks.
The challenges can be summarized by a quotation taken from a report for the
German Parliament: “One question for politics and society is whether the basic
conditions shaped by existing law are sufficient to ensure the protection and at the
same time the appropriate use of what are extremely personal data stored in
biobanks. The objective would have to be both not to endanger the protection of
the donors’samples and data, while at the same time providing the opportunity for
(^27) The case study is not yet published.
(^28) The answer is, presumably in all jurisdictions, clearly no, but it might come under discussion in
the future (see§§8, 9 of Genetic Diagnostic Act for the current legal situation in Germany).
(^29) Again, under the existing rules in most countries, and especially in Germany, this possibility has
to be denied; see§§10 par. 3 s. 4, 11 par. 3 of Genetic Diagnostic Act and for more details, e.g.,
Wollenschla ̈ger ( 2013 ), p. 161.
(^30) Chadwick et al. ( 2014 ), Juth, ( 2014 ), pp. 38–52.
(^31) Legally protected under Art. 13 ECHR.
(^32) Legally protected under Art. 8 ECHR; see for example CJEU, Case C-131/12Google Spain,
Judgment of 13.5.2014, ECLI:EU:C:2014:317; CJEU, Case C-291/12Schwarz, Judgment of
17.10.2013, ECLI:EU:C:2013:670.
Legal Aspects of Personalized Medicine 27