DOCTORAL THESIS DEFENSE REPORT

This is a report for the defense of the thesis of Carolina Mendes Franco, supervised by
Prof. Caitlin Sampaio and coordinated by Prof. Daniel Borillo, entitled “Protection and
Access to Minority Rights in Research on Health: a comparison of Brazil and France”,
and evaluated in this present document by Professor Eder Fernandes Monica.

1. Regarding the title, there was no mention of the specificity of the research,
namely, the Ethics Committees of both countries. In my comprehension, not
mentioning the French and Brazilian Ethics Committees would appear doubts
about the scope of the work.

2. In relation to the abstract, I suggest an insertion of the objectives of the work,

introducing their development in the thesis, as well a succinct explanation of the
comparative method used.

3. Considering the justification of the work, I understand that the research is

satisfactory, precisely because it discusses a topic of current relevance, with
profound juridical implications in the field of bioethics and its relations with
modern legal institutes of protection of the subject.

4. In terms of the interdisciplinary of the thesis, I suggest a deeper discussion

regarding the concept, since the literature has been exploring this concept for
some time and it understands, overall, that we need to overcome the notion that
interdisciplinarity deals with themes that go beyond the limits of a specific
discipline. In terms of the current state of the debate, the interdisciplinarity
would be present by the use of concepts that cross between different thematic
areas, even when dealing with a single discipline studied, and not necessarily in
the debate between the disciplines and their possibilities of convergence.

5. In my view, a debate on bioethics and the use of the body must go through
discussions on sociology and anthropology of the body, mainly focused on the
 notion of modern corporality, which is the basis for the constitution of current
medicine. Besides, the discussion about the vulnerability of bodies of the
constituent subjects of social "minorities" should be interpreted from the social
engineering process of the Modern National States, which invigorated the
population control within devices of mapping of its population, mainly by
instruments of biology and medicine. In this sense, there are elements of
practices of eugenics and the constitution of meanings of racism, based on a
body phenotypically understood as the pattern. Therefore, to speak of minorities
in this regard is to speak of the constitution of the standard body of the dominant
majority of a Western society. However, in addition, without losing the geo-
temporal meanings of the realization of the Western modernity project, which is
not the same for all countries.

6. As a result, we need a densification of the meanings of corporality and

modernity between the Brazil and France countries, observing their differences
and similarities; otherwise, we will not be able to use the comparative
methodology properly.

7. The creation of Research Ethics Committees happens within the advance of

social engineering processes. Therefore, they work as instruments that must
necessarily be validated by democratic channels, under penalty of being still tied
to a past stage of Western modernity. In this respect, the thesis statement
succeeds in its argumentation, since it is concerned with questioning the possible
meanings of democracy present in such committees, precisely in what concerns
the protection of the interests of minority groups. Nevertheless, it lacked a
conceptual discussion on democracy and its relation to the dynamics of medical
and biological power. Once this is considered, the work would offer potentially
more radical democratic devices to respond to the problem.

8. On the other hand, the use of the concept of minorities should relate to the
liberal theoretical framework, which, in its most recent update, embraces the
concept of multiculturality and identity. Thus, we need to advance the debate in
order to perceive the theoretical implications and linkages of the use of the
 concept of minority, which, in my view, is connected to a liberal sense of
modernity and a culturalist perception of the relations between subjects and
social groups. This is evident in the use of the concept of vulnerable in the
French system, expressed in figure 8 of the thesis.

9. The thesis statement is accurate when considering the sense of minority from the
concepts of coloniality and patriarchy, precisely because they assume different
perspectives when seen in the South-global context and in the European context.
In the Brazilian context, for instance, corporality has contents given by
colonialism and by the constitution of private and private senses of privacy,
closely linked to our Catholic-Christian tradition.

10. The comparison of the use of the body by science with the principles of legal
protection of modernity is a sensitive point of the debate. Its synthesis is the
production of a sense of radical democracy for corporality, little discussed in
Brazil. In a more strict sense, it is possible to comprehend data protection as an
instrument that guarantees the identity coherence that modernity has established
between consciousness and corporality. In an information society, the subject is
also the information that he produces and produces about himself. The creation
of institutional spheres of validation of ways of using information about human
corporality is an effective path for the preservation of democracy in its most
private and daily sense.

11. The part of the presentation of the results of the empirical researches is well
written and argued, with a good use of graphs and visual elements. The more
specific nuances on how the research were done, especially its implementation
difficulties, brought in item 3.3, helps to evaluate the work in a deeper way since
they are essential ponderations to evaluate the good quality of empirical research
of data collection.

12. Perhaps, in regard of future work, it would be interesting for the candidate to
work with concepts more related to democracy and power relations in order to
produce philosophical meanings about the use of concepts in the thesis. In any
case, the thesis statement accomplishes its goals and succeeds in producing a
 debate about the effectiveness of its hypothesis. Moreover, the comparative
analysis supports producing a profound understanding of our own context.
Finally, once again as a suggestion for future research, there is a more complex
critical debate regarding the concept of the minority, employed in the thesis with
little reflexivity about its implications.

For the above reasons, I highly recommend the approval of the doctoral thesis of
Carolina Mendes Franco.

With my most sincere greetings,

Rio de Janeiro, 09th July 2018.

Prof. Dr. Eder Fernandes Monica

Professor of the Faculty of Law and Postgraduate Programs in Sociology and Law, and in Law, Business
and Institutions, Federal Fluminense University (UFF).