Supporting a Phd Program in the “Foundations of the Life Sciences and their Ethical Consequences”
Project location: ITALY, Milan
Project start date: September 2013 - Project end date: October 2016
Project number: 2013-034
Beneficiary: FONDAZIONE VERONESI
The objective of the project is to train experts in the provision the adequate ethical counselling to oncological patients for their empowerment in the age of molecular medicine. This could be carried out thanks to the PhD Program in the “Foundations Of the Life Sciences And Their Ethical Consequences” (since now on FOLSATEC) at the Scuola Europea di Oncologia Molecolare of Milano (SEMM; www.semm.it/phd_folsatec.php).
Recent advances in molecular biology are drastically changing our understanding of cancer diagnosis, and therapy. This is possible thanks to progress in understanding the molecular basis of cancer, at the level of genetic predisposition as well as of its interaction with individual lifestyles and environments. Such understanding is in turn enabling the development of new diagnostic and therapeutic approaches.
Given this new scientific scenario, an innovative perspective on the relationship with the oncological patient is needed. In particular it is time for a drastic change in the ethical approach to the matter. It is time for an efficacious and competent ethical counselling in order to really empower cancer patients in the molecular medicine age.
Very often it is said that cancer patients have to be empowered in order to permit them to cooperate in the decisions concerning their diagnostic and therapeutic paths. However it not clear how the empowerment process should be carried out and how it differs from the standard ethico-legal information concerning consent. Otherwise stated, the empowerment of cancer patients is something that should not remain a formal and void commitment, but something that should be really put into practice to improve the quality of their life and the quality of their decisions. To achieve this aim we need also experts in providing the right ethical counselling for the right empowerment.
The project deals exactly with this important issue. That is, the Team wishes to train persons who should be competent to provide cancer patients and their relatives with the right tools to be really capable of making decisions on the basis of their own biographies, moral values, religious beliefs and wills.
This should be considered as a relevant part of the clinical approach to cancer patients, especially in a vision of oncological medicine that puts the independent and autonomous individual at the centre of its practice.
The activity of a cancer hospital meets daily serious ethical issues and consequent difficult decisions regarding treatments and care to be made by patients, families, and health professionals in a shared process. These issues involve moral values, religious beliefs, legal constraints, professional duties and medical guidelines. Thus, it is not so easy to find right answers to moral quandaries. Actually, in order to achieve the best awareness and to perform the best choices patients and their relatives have to be ethically empowered, that is, they should be provided with the adequate tools to acquire the capacity to gain power (control) over the ethical aspects concerning their diagnostic and therapeutic pathways.
The training of the competent ethical counsellors for empowering cancer patients in the molecular medicine age will be realised by the FOLSATEC PhD program through the hiring of an adequate staff of training consultants.
It is a four-year PhD program launched in 2006 with an agreement with the University of Milano, which is the awarding body. It is coordinated by Giovanni Boniolo (www.semm.it/boniolo.php). It is open to students having either a scientific or a philosophical degree as well as to medical doctors. The course aims to create internationally recognized scholars in the fields of
• Biomedicine and clinical practice: philosophical questions
• Biomedicine and clinical practice: individual and public ethical implications
• Biomedicine and clinical practice: a Science and Technology Studies (STS) approach.
The cultural environment in which the FOLSATEC program is carried out has a strong impact on its international validity and excellence. Thus, it is necessary to spend some words on it. In 1998, in Milano (Italy) was established the Ifom-Ieo Campus (www.ifom-ieo-campus.it). It is one of largest European biomedical research centres investigating the molecular basis of cancer. It has a great scientific impact in Italy and abroad. It was created by the joint efforts of the FIRC Institute of Molecular Oncology (IFOM) and the Department of Experimental Oncology of the European Institute of Oncology (IEO), which have expanded and integrated their research activities on a common location. In the Campus there are about 450 scientists coming from all over the world and more than 30 research groups (www.ifom-ieo-campus.it/ research/grouplist.php). Scientists at the Ifom-Ieo Campus perform research into some of the most fundamental questions in cancer research, in fields ranging from molecular and cellular biology, genetics, functional genomics, proteomics, bioinformatics, systems biology and biomedical humanities. As said the Ifom-Ieo Campus was co-founded by two institutions:
• IFOM (The FIRC Institute of Molecular Oncology) is a research institute dedicated to the study of the molecular mechanisms underlying cancer formation and development.
• The Department of Experimental Oncology (www.ieo.it/English/research/ExperimentalOncology/Pages/Experimentaloncology.aspx) of The European Institute of Oncology (IEO, www.ieo.it) is composed of several independent research groups, whose scientific interests include the entire research and applicative chain from the basic research to the individual oncological patients’ interests. IEO is an independent, biomedical research institution and one of the 8 Ministry of Health-designated comprehensive cancer centres in Italy. In addition to providing patients with the best care available, IEO is committed to cutting-edge research in oncology, ranging from basic to translational research and clinical trials.
The Scuola Europea di Medicina Molecolare (SEMM; www.semm.it) is hosted at the Ifom-Ieo Campus hosts. SEMM is a private foundation established in 2001 by a joint ministerial decree of three Italian Ministries (Health, Finance, and Education & Research). SEMM currently offers 3 PhD programs: one in ‘Molecular Medicine’; one in ‘Medical Nanotechnology’; and one in the ‘Foundations of the Life Sciences and their Ethical Consequences’. More than 150 students are enrolled in these courses. The teaching staff is composed of 55 professors. The mission of SEMM is to promote training and research within emerging sectors concerning biomedicine, such as genomics and post-genomics, molecular medicine, nanotechnologies and biomedical humanities.
The scientific and humanistic excellence should be noticed. Research at the Ifom-Ieo Campus covers virtually every aspect of molecular oncology and its humanistic implications. Scientists at the Ifom-Ieo Campus are recognized leaders in their disciplines. As an example, in 2007, the Campus exceeded 2000 points of Impact Factor, with an average IF of ~ 10. In the field of the humanities, ~ 90% of the papers coming from an Italian institution published in international peer reviewed journals are produced by the group “Biomedical humanities’ led by Giovanni Boniolo.
As said, the FOLSATEC program is one the three PhD programs run by SEMM. Since its establishment, the program has had applications from many different European and non-European countries and 27 PhD students have been enrolled (14 Italians, 4 Germans, 1 American, 1 Polish, 2 Serbians, 1 Canadian, 1 South African, 1 Lithuanian, 1 Brazilian, 1 Australian).
During the first two years, courses for about 250 hours per year are offered.
Beside the theoretical basis as described above, each student, independently of his/her original background, has to spend during the first year, half of his/her time in three different research laboratories within the Ifom-Ieo Campus in order to be acquainted with the real up-to-date science. At the end of the firs year, each student chooses a lab at the Ifom-Ieo Campus or at the IEO hospital, and here he/she spends half his/her time for about another year. Usually this lab activity should have some correspondence with his/her own research.
These lab activities render the training proposal innovative and unique since there is no other place in the world where students in a humanistic program can spend at least half of their time working in a real research lab or in a real cancer hospital and this where they can deal with empirical issues everyday.
Moreover, the FOLSATEC program offers
• The Student Meeting with Journal Review. Each month, either the second year or the third year students present the status of their researches. Each presentation is then collectively discussed. At the end, there is a review of the most relevant papers published in the fields of interest of the program. The review is prepared and presented by the students.
• The Reading Club. Over the four years program the students are asked to autonomously organize the collective reading of the classic works in the field of ethics and philosophy of biomedicine.
Each student is followed by
• An internal supervisor chosen within the research and teaching staff.
• An external supervisor chosen preferably in Europe according to the research field.
• A lab supervisor chosen within the Ifom-Ieo Campus or at the IEO hospital.
This interdisciplinary background can provide an educationally fertile place for the development of the necessary expertise for the ethical counselling, which is suitable for oncological healthcare provision by putting patients and their needs at the center of the clinical process. We thereby indicate the educational and methodological curriculum that is required for the training of such a professional figure. For the sake of analytical clarity we divide the development of the project into three main stages: i) Data gathering; ii) Data analysis; and iii) Dissemination of the project main findings.
i) Data gathering: At this stage the researcher involved in the project will carry out a careful collection and review of the existing literature on the topic (of which we give an indication in the bibliography section). This process will not be reduced to the analysis of the philosophical and psychological literature on empowerment and the problem of ethical consultancy, but will also aim at mapping how such commitment has been implemented at the level of public policy and institutional guidelines in Europe and the United States. The researcher is expected to conduct semi-structured interviews with all the relevant stakeholders (e.g. physicians, healthcare professionals, policy-makers, patient advocacy groups, etc.). This step will be carried out in the first 12 months of the project, along with the other educational activities that are part of the institutional curriculum of FOLSATEC. This phase of the project is supposed to provide an extensive account of the current state-of-the-art in the field, as well as the existing weaknesses of present approaches to empowerment and ethical counselling.
ii) Data analysis: The second stage of the project (18 months) will start from a qualitative analysis of the data gathered in the first phase of the project. At the methodological level, the interpretation of these data will be carried out through the employment of tools that may be: “observed impression”, “coding”, “semantic content analysis”, and the like. In order to boost the methodological competences of the researcher, we envision the possibility to integrate the educational curriculum of FOLSATEC, with the attendance of Summer Schools, or Professional Courses dedicated to qualitative analysis. This part of the project aims at elaborating and developing an account for the implementation of institutionalized ethical counselling, yielding the empowerment of individual patient. In particular, this approach will be tailored to the specific aims and objectives that characterise healthcare provision and research (involving patients) at the Istituto Europeo di Oncologia (IEO).
iii) Dissemination of the project main findings: The final stage of the project (6 months) aims at bringing to the academic and public attention the results of the research. In order to achieve this end, the researcher will:
1. publish at least one relevant contribution (article) in an international peer-reviewed journal;
2. participate to international events (conferences, seminars, workshops, etc.) on empowerment and ethical expertise in clinical counselling;
3. elaborate a white-paper on how to implement ethical consultancy in healthcare provision;
4. organize an event in which the main findings of the project will be presented to the public broadly understood.
The training and the activities above indicated will be carried out inside the FOLSATEC PhD program by a staff of training consultants who will be suitably hired.
The Nando Peretti Foundation has awarded as grant to this project. The Ethical Counselling in Cancer Care will have a sensible impact on the lives of both cancer patients and their relatives, since it is thought to give them the right ethical tools to empower them in order to face the extremely serious and shocking situations and decisions they meet during the diagnosis, the treatment and the care of the oncological pathology. Care of patients means something more than the correct diagnosis and the correct treatment. Nowadays, it means also empowering patients and their relatives to share all the steps of the path they have to walk. This is the reason why we need to train expert ethical counsellors, and the FOLSATEC PhD Program is the suited educational environment. In order to carry out this objective a staff of adequate training consultants have to be hired.