Abstract
When dealing with scientific freedom as a collective value it is worth making a reference to the human rights perspective and, in particular to the Right to Development (adopted by the UN General Assembly in 1986). By virtue of this right, everyone has the right to participate in and contribute to an all-embracing development, which enhances everyone’s rights and freedoms and can give access to its benefits to the entire human community. The concept of development is perfectly compliant with the scope of striking a correct balance between conflicting rights in informed consent process, both from the individual dimension (the relationship between the individual part of the research and the researcher) and from the collective one (to contribute to the development and enhancement of humanity). This way, the collective right to development operates as a vector of individual freedoms, adding much more values to the juridical approach, including a strong idea of substantial equality and solidarity, making any human being responsible for a concrete participation in the development process.
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Notes
- 1.
For example, the 1990 report of the Commission on Health Research for Development concluded that the expenses on health research for the needs of developing countries were not enough and that this should have been increased in the following years. See. S.A. Matlin, Research and Innovation in Health and Development, in A. Gatti, A. Boggio (eds.), Health and Development, Houndmills, 2009, at 81.
- 2.
For example, the 1990 report of the Commission on Health Research for Development concluded that the expenses on health research for the needs of developing countries were not enough and that this should have been increased in the following years. See. S.A. Matlin, Research and Innovation in Health and Development, in A. Gatti, A. Boggio (eds.), Health and Development, Houndmills, 2009, at 81.
- 3.
P. Barile, Nuovi diritti e libertà Fondamentali, in F. Riccobono (ed.), Nuovi diritti dell’era tecnologica, Milano, 1991, at 2.
- 4.
Article 2 states that: “The Republic recognises and guarantees the inviolable rights of the person, both as an individual and in the social groups where human personality is expressed. The Republic expects that the fundamental duties of political, economic and social solidarity will be fulfilled”.
- 5.
C. Piciocchi, I diritti inviolabili, in C. Casonato (ed.), Principi fondamentali, Torino, 2010, at 90
- 6.
See infra, at par. 3.
- 7.
Available at 〈http://papers.ssrn.com/sol3/papers.cfm?abstractid=1450006〉.
- 8.
The highest Italian poet Dante Alighieri underlines it in his most famous poem, La divina Commedia, when presenting the person of the Ancient Greek hero Ulysses, he makes him saying: “Considerate la vostra semenza / fatti non foste a viver come bruti / ma per seguir virtute e canoscenza” (“Consider ye the seed from which ye sprang; / Ye were not made to live like unto brutes, / But for pursuit of virtue and of knowledge”, English translation available at 〈http://dante.ilt.columbia.edu/new/comedy/〉). See Dante Alighieri, Divina Commedia Inferno XXVI, 116–120.
- 9.
Available at 〈http://www2.ohchr.org/english/law/cescr.htm〉.
- 10.
The concept of financially narrowed rights, with reference to social rights, and in particular, to the right to health, is quite wide-spread in the Italian constitutional legal scholars’ debate. F. Merusi, Servizi Pubblici Instabili, Bologna, 1990; R. Ferrara, L’ordinamento della Sanità, Torino, 2007; C. Pinelli, Diritti costituzionali condizionati, argomento delle risorse disponibili, Principio di equilibrio finanziario, in A. Ruggeri (ed.), La motivazione delle decisioni della Corte costituzionale, Torino, 1994, at 548
- 11.
- 12.
The meetings were held in Amsterdam (7–8 June 2007), Galway (23–24 November 2008) and Venice (16–17 July 2009) and the working papers are available at http://www.unesco.org/new/en/unesco/.
- 13.
Available at 〈http://www.un.org/documents/ga/res/41/a41r128.htm〉.
- 14.
On the need for the concretisation of human rights, whose adaptable extent depends on the social, historical and geographical context in which they apply, see e.g. J. Hersch, Les droits de l’homme d’un point de vue philosophique, Unesco, Genève-Paris 1990, passim
- 15.
G. Tusset, Il diritto alla sviluppo come diritto umano, in PUD, 1, 1992, at 77.
- 16.
Article 1 states that: “The right to development is an inalienable human right by virtue of which every human person and all peoples are entitled to participate in, contribute to, and enjoy economic, social, cultural and political development, in which all human rights and fundamental freedoms can be fully realized”; on the responsibilities of both individuals and States in contributing to the development, see Articles 2 and 4 of the Declaration.
- 17.
Article 8 provides as follows: “States should undertake, at the national level, all necessary measures for the realization of the right to development and shall ensure, inter alia, equality of opportunity for all in their access to basic resources, education, health services, food, housing, employment and the fair distribution of income. Effective measures should be undertaken to ensure that women have an active role in the development process. Appropriate economic and social reforms should be carried out with a view to eradicating all social injustices”.
- 18.
A.M. Fox, B. Mason Meier, Health as a Freedom: Addressing Social Determinants of Global Health Inequities Through the Human Right to Development, in Bioethics, Vol. 23, n. 2,2009, at 114
- 19.
A.M. Fox, B. Mason Meier, Health as a Freedom, cit., at 119.
- 20.
A. Sengupta, Development Cooperation and the Right to Development, 2003, at 3, available at <http://www.harvardfxbcenter.org/resources/working-papers/FXBC WP12–Sengupta.pdf> (last visited June 24, 2011 ).
- 21.
For more details, A. Sengupta, Development Cooperation, cit., at 7
- 22.
Above all, see A.M. Fox, B. Mason Meier, Health as a Freedom, cit., at 112–122, passim.
- 23.
On this topic, M. Nussbaum, A.K. Sen (eds.), The Quality of Life: a Study Prepared for the World Institute for Development Economics Research (Wider) of the United Nations University, Oxford, 1993.
- 24.
J. Harris, Scientific Research is a Moral Duty, in J Med Ethics, 31, 2005, at 242–248.
- 25.
I. Brassington, Defending the duty to research?, in Bioethics, 25, 2011, at 21; I. Brassington, John Harris’ argument for a duty to research, in Bioethics, 21, 2007, at 160; in general, see e. g. I. de Melo-Martin, A duty to Participate in Research: Does Social Context Matter? in American Journal of Bioethics, 8(10), 2008, at 28.
- 26.
A. Chapman, The REBSP and the Right to Health, Report of the Experts’ Meeting on The Right to Enjoy the Benefits of Scientific Progress and its Applications, Amsterdam 7–8 June 2007, available at http://unesdoc.unesco.org/images/0015/001545/154583e.pdf (last visited June 24, 2011).
- 27.
See Venice Statement on the Right to Enjoy the Benefits of Scientific Progress and its Applications, UNESCO, 2009, available at 〈http://shr.aaas.org/article15/Reference Materials/VeniceStatement July2009.pdf〉 (last visited June 24, 2011).
- 28.
B. Starfield, Promoting Equity in Health Through Research and Understanding, in Developing World Bioethics, Vol. 4, n. 1, 2004, at 76.
- 29.
Legislative Decree no. 196 of June 30, 2003, Codice in Materia di Protezione dei Dati Personali [Code on the security of personal data].
- 30.
Autorizzazione al Trattamento dei Dati Genetici, 22nd February 2007 (in force until 30th June 2011), by the Autority for the Protection of Personal Data [Garante per la Protezione dei Dati Personali]
- 31.
For a view of the possible perspectives on the Italian provisions on informed consent in genetic research see e.g. M. Macilotti, Consenso informato e biobanche di ricerca , in Nuova Giur. Civ. Commentata, 3, 2009, at 153.
References
P. Barile, Nuovi diritti e libertà Fondamentali, in F. Riccobono (ed.), Nuovi diritti dell’era tecnologica, Milano, 1991, at 2.
C. Piciocchi, I diritti inviolabili, in C. Casonato (ed.), Principi fondamentali, Torino, 2010, at 90
G. Tusset, Il diritto alla sviluppo come diritto umano, in PUD, 1, 1992, at 77.
A.M. Fox, B. Mason Meier, Health as a Freedom: Addressing Social Determinants of Global Health Inequities Through the Human Right to Development, in Bioethics, Vol. 23, n. 2,2009, at 114
A. Sengupta, Development Cooperation and the Right to Development, 2003, at 3, available at <http://www.harvardfxbcenter.org/resources/working-papers/FXBC WP12–Sengupta.pdf> (last visited June 24, 2011 ).
J. Harris, Scientific Research is a Moral Duty, in J Med Ethics, 31, 2005, at 242–248.
I. Brassington, Defending the duty to research?, in Bioethics, 25, 2011, at 21; I. Brassington, John Harris’ argument for a duty to research, in Bioethics, 21, 2007, at 160; in general, see e. g. I. de Melo-Martin, A duty to Participate in Research: Does Social Context Matter? in American Journal of Bioethics, 8(10), 2008, at 28.
A. Chapman, The REBSP and the Right to Health, Report of the Experts’ Meeting on The Right to Enjoy the Benefits of Scientific Progress and its Applications, Amsterdam 7–8 June 2007, available at http://unesdoc.unesco.org/images/0015/001545/154583e.pdf (last visited June 24, 2011).
B. Starfield, Promoting Equity in Health Through Research and Understanding, in Developing World Bioethics, Vol. 4, n. 1, 2004, at 76.
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Busatta, L. (2012). First Observations on the Right to Development Approach to Informed Consent in Medical and Genetic Research. In: Bin, R., Lorenzon, S., Lucchi, N. (eds) Biotech Innovations and Fundamental Rights. Springer, Milano. https://doi.org/10.1007/978-88-470-2032-0_25
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