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For the longest period, the United Nations Educational, Scientiﬁc, and Cultural Organization (UNESCO) has been the only UN agency that has had a bioethics program. The rationale for it is the mandate of UNESCO that covers education, science, culture, and communication, and its constitution aims at creating the foundations of the intellectual and moral solidarity of humankind. The entry relates the inception of the bioethics program to the 1970s, focusing on ethics and biology. It moves to the 1980s with activities that took up the challenges of scientiﬁc progress to human rights. In the 1990s, UNESCO established a full-ﬂedged program, created the International Bioethics Committee (IBC), and committed itself in formulating principles and standards related to the human genome and grounded on the Universal Declaration of Human Rights (1948). The next step is to examine the speciﬁc issues concerning consent, conﬁdentiality, privacy, etc., in relation to the collection, processing, use, and storage of human genetic data. The third step is the elaboration of a far-reaching declaration on bioethics and human rights. The three UNESCO declarations provide a useful basis for states to legislate and regulate and a solid ground for a global ethics education.
The United Nations Educational, Scientiﬁc, and Cultural Organization (UNESCO) is a specialized intergovernmental organization of the United Nations system (to date, 195 member states and nine associate members) with headquarters in Paris (France). Its competence extends to education, natural and exact sciences, social sciences and humanities, culture, and communication. Its constitution assigns to it a speciﬁc intellectual and ethical mandate. One of its unique features is that, alongside to states, the intellectual, scientiﬁc, and cultural communities are part of its constituency. Besides its action in member countries, UNESCO is an international forum of intellectual exchange of ideas as well as a political forum for decision-making and standard setting in key areas, such as bioethics.
This essay is related to the achievements of UNESCO in the ﬁeld of bioethics but also the difﬁculties encountered and the limits of its action. Its endeavor stretches from the 1970s to date. The present subject matter leads itself to a chronological presentation, stressing the role of international negotiations in reaching agreements. The topics examined by UNESCO reﬂect the state of discussions on a given subject in various intellectual and political communities, but in return, they inﬂuence the course of the debate and direction of action.
Emergence Of Bioethics At UNESCO
The seminal initiative of UNESCO related to ethics was the 1970 International Symposium organized in Madrid (Spain). Its main concern was the outcomes and problems of scientiﬁc research in molecular genetics. Considering the considerable progress in genetic research and the uncharted prospects of biomedical applications, the symposium examined the various possibilities of genetic manipulation and drew attention to the erosion of biodiversity.
Biology And Ethics
In the aftermath of the “Asilomar Moratorium” (1975), an International Symposium in Varna focused on “Biology and Ethics.” The Bulgarian philosopher Nikolaï Todorov, member of the Executive Board of UNESCO (1972–1976), played a crucial role in the conception of this symposium attended by biologists and philosophers. Reﬂections developed during the symposium evolved around the life sciences (Ribes 1978).
Human Rights Facing Recent Scientific Progress And Applications
In the 1980s, societal issues raised by life and environmental sciences were permeating through the concerned professional communities (medical doctors, nurses, hospital managers), the civil society, and the policy-making bodies. Three examples illustrate this point:
- Discussions within the World Medical Association (WMA) in order to amend the “Ethical Principles of Medical Research Involving Human Subjects” (1964)
- Creation in 1983 by President François Mitterrand of the ﬁrst-ever National Consultative Committee for Life and Health Sciences (CCNE)
- Establishment by the Council of Europe in 1985 of the “Ad Hoc Committee of Experts on Progress in Biomedical Sciences” (CAHBI) (later the “Steering Committee on Bioethics” (CDBI) and the “Committee on Bioethics”)
In this context, UNESCO in 1985 decided to focus on the impact of recent scientiﬁc progress and applications on human rights. A multidisciplinary meeting in Barcelona jointly organized with major scientiﬁc unions and federations highlighted the ethical and legal issues raised by behavioral sciences, neurodegenerative diseases, and psychic disorders. Tensions between different groups of participants were noticeable. One group considered that scientiﬁc research and their applications toward the well-being of patients should be the overriding preoccupation. Another group argued in favor of the primacy of ethics over sciences, recalling the famous maxim of François Rabelais that “Science without conscience is but the ruin of the soul.” Yet another group advocated that freedom of research be ﬁrmly established provided that scientiﬁc activities do not impede on the exercise of human rights.
The meeting also identiﬁed the need to map the clinical and biomedical research and applications that could have an impact on human rights. This mapping revealed important ethical concerns:
- The unequal access to health care by vulnerable groups
- The need to frame genetic screening and testing, including access to resulting data by state agencies, employers, insurance companies, schools, etc.
- Importance of genetic counseling so as not to overlook the psychological impact of genetic test results on individuals and members of families
- The importance of reaching an international consensus on organ harvesting and transplantation, the thorny issues being the noncommodiﬁcation of human body parts; the harvesting of organs, tissues, and cells on cadavers; and the scarcity of organs
The underlying problem in this context was the position, or rather the absence of position, taken by the Holy See and by Muslim authorities on brainstem death. In contrast, most of the other religious traditions, for example, Buddhism and Judaism, were more ﬂexible about the deﬁnition of death and organ donation. The working group created in 1985 by the Pontiﬁcal Academy of Sciences had taken position in favor of the deﬁnition of brainstem death but a number of theologians opposed it.
The same could be said about discussions in Muslim professional circles. Competent surgeons in Muslim countries were in a position to save lives or to restore eyesight or kidney functions provided that they could harvest organs and tissues (such as the cornea) on cadavers. After extensive debate, including the Al-Azhar University in Cairo, the Islamic Fiqh Council in 1988 promulgated a fatwa (“Islamic legal decree”) recognizing brain-stem death as an appropriate deﬁnition of death and asserting that organ harvesting on cadavers is not against Islam.
New Reproductive Technologies And Women’s Rights
Medically assisted reproduction had made tremendous progress in the 1980s, and public debate was heated around in vitro fertilization, free access to the technology including its funding, sperm and egg donation, frozen supernumerary embryos, etc. UNESCO launched a study on the impact of new reproductive technologies on gender issues and women’s rights. This proved to be a trickier venture than it seemed at ﬁrst. Most papers received had a Eurocentric bias. UNESCO pursued this project until it was possible in the 1990s to present the issues from various cultural perspectives (UNESCO 2001).
The Bioethics Program At UNESCO
In 1989, the General Conference decided to give priority to “Human Rights and Scientiﬁc and Technological Progress” (Resolution 25 C/7.3). Thus, the newly elected director general, Federico Mayor, biochemist and cofounder of the “Severo Ochoa Centre of Molecular Biology,” was eager to tackle this subject. The political context was not easy because the USA had left UNESCO in 1984 and the UK in 1985. At the time, some critics argued that UNESCO had wandered from the preoccupations of intellectual and scientiﬁc communities giving priority to preoccupations raised within political milieus.
The director general felt that UNESCO should move forward. This was in line with the organization’s mandate as deﬁned by its constitution and it behooved him to fulﬁll it. Close advisers tried to talk him out of establishing a bioethics program. They feared that the program would run into a dead end because of the composition of UNESCO member states (192). Out of fairness, one should recognize that at the time, the debate on philosophy, ethics, and the life sciences was rather inconclusive.
Bioethics And Social Consequences Of Biomedical Research
Science and technologies were rapidly reshaping the world. The director general decided to call an International Meeting on Bioethics and Social Consequences of Biomedical Research (1991, Moscow). The meeting was to draw up a coherent program. The organizing committee set up the following programs: organ transplantation, informed consent, bioethics and law, and institutionalization of bioethics.
On organ transplantation, the debate focused on the availability and harvesting of organs, tissues, and cells, including regulation over consent, as well as access to organs. The educational and information role of UNESCO was stressed in organ donation campaigns, in public sensitization about brain-stem death, and in noncommodiﬁcation of organs. Truth telling and respect for cultural values were considered as crucial to informed consent. The relations between bioethics and lawmaking were already debated here and there. Some argued that political bodies should not legislate over bioethical issues. Legislation would lead to a “judicialization” of these matters and fuel further regulation, ethical principles deﬁned by ethics being more useful. Others thought that legislative action was essential in order to establish norms, for instance, in the case of experimentation involving human persons. Yet, a third trend was in favor of legislation, provided it was couched in general terms.
Since views diverged, UNESCO was expected to promote international exchange of experience, with the aim of reaching international agreements on bioethics. UNESCO was also invited to facilitate the creation of an International Association of Bioethics.
If this meeting paved the way for a speciﬁc bioethics program at UNESCO, some bioethicists furrowed their eyebrows in disagreement. The ﬁrst concern was about putting bioethics on the international political agenda through UNESCO. The second one was related to the absence of the USA and of the UK in the governing bodies of UNESCO. The third worry had to do with the possible establishment of an association of bioethics under the aegis of an intergovernmental agency. This was taken care of by the creation in 1992 in Amsterdam of the International Association of Bioethics.
The International Bioethics Committee (IBC)
The Moscow meeting had met some of its objectives but had not deﬁned a genuine slot for UNESCO. Two events were going to convince the director general that he should create a new program. Following the launching of the Human Genome Project, controversy was raging in the 1990s (and still does) over patenting of genetic sequences, not only between European and US research communities but also within the USA. Part of the controversy was due to a difference between a discovery and an innovation. Federico Mayor could not accept that scientiﬁc discoveries could be patented. He often said that “DNA is the alphabet of life and genetic sequences the words of life. You cannot patent the dictionary of life!” The director general had in mind an international instrument on the human genome that would proclaim the human genome as the common heritage of humankind.
The second event was his encounter with Noëlle Lenoir, a French jurist, member of the Constitutional Council of France, who had just published a report commissioned by the prime minister on the ethical, legal, and social issues raised by the life and health sciences (Lenoir and and Sturlèse 1991).
Strategy Of The IBC
The strategy to laying down the conditions of success of the program was of essence. First, Noëlle Lenoir established a brainstorming group mainly composed of geneticists, oncologists, neuroscientists, and embryologists. Although some jurists participated in the debate, legal issues and their appropriate formulation were set aside until a clear picture of the scientiﬁc issues emerged.
Second, the important challenge was to ascertain the credibility of the nascent program. The selection of scientists to be part of the group and for the hearings was key features for its credibility.
Third, this was backed by a coherent communication plan in order to ensure visibility. It included regular exchanges with national scientiﬁc communities and concerned civil society representatives active in lobbying and public debate (including patients’ associations), regular contacts with the scientiﬁc and national media, as well as the pharmaceutical and biotechnological industry. In this context of targeted communication, UNESCO coproduced for television a 26-min ﬁlm entitled “Genome: Odyssey of the Species,” with interviews with heads of states or prominent political ﬁgures and eminent scientists (from Algeria, China, the Czech Republic, Israel, Senegal, Uruguay, and the USA, to name a few).
Fourth, appropriation of the program was a key element for its sustainability. The stakeholders of UNESCO had to recognize the program as designed by the scientiﬁc communities, the civil society, and the political authorities, with UNESCO having a maieutic role. This process was unfailingly pursued, with the involvement of National Commissions of UNESCO, brieﬁng sessions of delegations to UNESCO, and missions to capital cities.
One indicator of this process of appropriation was the increasing number of universities (Argentina, Israel, Kenya, Spain, etc.) who wished to establish UNESCO Chairs in Bioethics. At present, there are 11 UNESCO Chairs throughout the world. One of them deserves special mention: the UNESCO Chair in Bioethics and Human Rights of the University of Haifa (Israel). Thanks to the dynamism of the chair holder, Amnon Carmi, its network spread over 50 countries. The conferences organized by the UNESCO Chair cover a wide range of bioethical issues and gather several hundreds of participants.
Elaboration Of The Universal Declaration On The Human Genome And Human Rights (1993–1996)
UNESCO was the ﬁrst universal international agency to set up a bioethics program. Established in 1993, the International Bioethics Committee (IBC) consisted of 55 members. Its composition, of the highest possible caliber, was multidisciplinary and with wide geographic coverage. Its achievements were welcomed by the General Conference in 1993, and the director general was congratulated for his initiative.
One landmark event also fed in the deliberations of the IBC: the 93rd Inter-Parliamentary Conference on “Bioethics and Its Implications Worldwide for Human Rights Protection” (Madrid, Spain, 1995). Considering the circumstances in which the withdrawal of the USA and the UK had taken place, Federico Mayor was convinced that UNESCO had to establish relations not only with governments but also with legislative bodies. Hence, Federico Mayor was determined to link up with parliamentarians.
Claude Huriet, physician and French senator, was the kingpin of the cooperation between the French authorities, the Inter-Parliamentary Union, and UNESCO for the preparations for that conference. Attended by over 100 delegations of house representatives and senators, this conference focused the attention of legislative bodies and governments on bioethics and brought it on the political forefront.
UNESCO was instrumental in drafting the resolution adopted at the close of this conference.
Some of the principles outlined and rights proclaimed were useful to the IBC. Examples are “the intangibility of the genetic heritage of the human species” and “the unavailability of the person [.. .] including human genes and their sequences” and having to “ensure equitable sharing of knowledge and advances resulting from scientiﬁc research and new medical practices,” to mention a few.
In parallel with the deliberations of the IBC in plenary sessions, a legal commission, composed of some of the most distinguished jurists in the world, elaborated successive drafts (genesis of the Universal Declaration on the Human Genome and Human Rights 1999). After some discussion, the IBC believed that it would be appropriate to qualify this declaration as universal because the human genome underlined the fundamental unity of all the members of the human family as well as the inﬁnite diversity of the human family because of the uniqueness of each of its members.
Article 1 of the preliminary draft of the universal declaration as formulated by the IBC stated that “The human genome is the common heritage of humanity.” This did not raise major difﬁculties. Most of the articles related to human dignity as the overarching principle; nondiscrimination based on genetic characteristics; assessment of risks and beneﬁts of research to persons; prior, free, and informed consent; conﬁdentiality and right to privacy; freedom of research; solidarity and international cooperation; responsibility of researchers and institutions; and obligations of states were consensual in the IBC.
Adoption Of The Universal Declaration Of The Human Genome And Human Rights (1997)
The legal procedure for the adoption of instruments by the General Conference of UNESCO provides for the review of a preliminary draft by a Committee of Governmental Experts before its submission to the legislative bodies (Executive Board and General Conference). Once adopted, a declaration or a recommendation has a moral value and is not binding for member states, although it becomes an international reference and often inspires national legislations. In the UN system, declarations adopted unanimously and by acclamation or by consensus have a major purport, unlike declaration that would have been adopted after a split vote.
This may have sounded familiar to the jurists of the IBC but certainly not to the majority of its members (scientists, philosophers, etc.). There was a communication gap in this respect because IBC members were surprised, to say the least, by the changes introduced in the preliminary draft during the meeting of the Intergovernmental Committee of Experts in 1997.
The Committee of Governmental Experts (100 participants), chaired by the late Héctor Gros Espiell, former minister of foreign affairs of Uruguay, turned out to be rather strained. The subject matter being quite novel to UNESCO was one reason. At the time, the Council of Europe was elaborating the draft of the “Oviedo Convention,” of a much larger scope, and European states wished that the UNESCO declaration reaches up at least to the same level of standards as the convention in progress. This was a second reason. A few countries argued in the backstage that they had not have sufﬁcient time to study the preliminary draft, considering in particular their “federal” structure. For instance, Canada would have liked to consult thoroughly the representatives of the First Nations, because biopiracy was being hotly debated. When the drafting group elected by the expert committee was established, Canada, which belonged to it, stepped out of the meeting. This was a third reason for the tension.
Right from the inception of the committee meeting, Article 1 “The human genome is the common heritage of humanity,” was clearly the stumbling block.
This entry is not the place to revisit the debate on the concept of “common heritage of humanity.” However, for the clarity of the presentation, some background needs to be recalled. UNESCO had already used this concept in the Declaration of Principles of International Cultural Co-operation (1988). Article I (3) states that “All cultures form part of the common heritage belonging to all mankind.” Nevertheless, the legal community was split. Some considered that the concept of “common heritage of humanity” could only be used through a speciﬁc treaty. Others argued that res communis (common good) was already a concept in Roman law and referred to whatever should be out of the realm of private property.
Hence, one group of countries, led by Germany, interpreted “common heritage of humanity” as meaning that the human genome is eluded from the individual realm. This could encourage states to consider that it is not within the purview of individual rights and freedoms. A second group of countries, with Brazil as spokesperson, believed that the formulation “common heritage of humanity” meant that the human genome was “free for all”: res communis in this sense becomes res nullius, good that belongs to no one except for the ﬁrst claimer. This would lead some pharmaceutical and other companies to afﬁrm that in case of a discovery that leads to an innovation, no compensation is due to local communities since the human genome is common heritage. A third group, in accord with the IBC formulation, argued that this research paper was not meant to elude the human genome from the individual sphere or to commodify it but was a symbolic formulation. In addition, common heritage meant that it was shared by all humanity and could not be appropriated.
After three and a half days of intense discussions, the committee reached an agreement on the following formulation: “In a symbolic sense, it [the human genome] is the heritage of humanity.” Later on, if some members of the IBC regretted this formulation, others, including the late Héctor Gros Espiell, were of the opinion that “in a symbolic sense” reinforced the scope of Article 1 and that the deletion of “common” withdrew nothing to the fact that it was “heritage of humanity.”
Other articles elaborated by the IBC were modiﬁed and new ones included in the draft to be submitted to the General Conference. A case in point was the commodiﬁcation of the human genome and the patenting of genetic sequences (see also section “To Patent or Not to Patent?”), hence the formulation of Article 4: “The human genome in its natural state shall not give rise to ﬁnancial gains” (UNESCO 1999).
A drafting group was set up during the General Conference in order to settle disagreements about the future of the IBC. The drafting group decided that an ad hoc working group, composed of representatives of member states, should be convened as soon as possible after the General Conference with the task of advising the director general on the constitution and the tasks of the IBC (29 C/Resolution 17). When it met in early 1998, it proposed to the director general the reduction of the number of IBC members from 55 to 36 and the creation of an Intergovernmental Bioethics Committee (IGBC).
This committee composed of government experts was twinned with the IBC and meant to meet right after the IBC. Some 20 years after this event, one can put forward the hypothesis without taking undue risk that this deal was concluded in order to facilitate the adoption of the universal declaration. The General Conference in 1997 adopted unanimously and by acclamation the Universal Declaration on the Human Genome and Human Rights. A year later, in the framework of the 50th anniversary of the Universal Declaration of Human Rights, the General Assembly of the United Nations endorsed the Universal Declaration on the Human Genome and Human Rights (Resolution 53/152) by an overwhelming majority (UNESCO 2000).
From The Universal Declaration On The Human Genome And Human Rights (1997) To The Universal Declaration On Bioethics And Human Rights (2005)
Ryuichi Ida, professor of international law in Kyoto (Japan), was designated by the director general as president of the newly redeﬁned IBC. Following the adoption of the universal declaration, UNESCO designed the Guidelines for the Implementation of the Universal Declaration on the Human Genome and Human Rights that would have been conducive to an evaluation in 2002 of the effectiveness of the instrument (Universal Declaration on the Human Genome and Human Rights: From Theory to Practice 2000).
To Patent Or Not To Patent?
The discussion about the patenting of the genetic sequences was an underlying subject that was discussed by the IBC for two decades. In 1992, Charles Auffray, a French geneticist who contributed to the mapping of the human genome, presented to Federico Mayor the results of the mapping undertaken by the French research laboratory GENEX PRESS. The French molecular biology community was in favor of the free ﬂow of genetic information and proposed that human genetic sequences be proclaimed “heritage of humankind.”
UNESCO studied this question at a symposium in 1993 attended by patent lawyers, copyright and related rights lawyers, and geneticists. Some stuck to the position that there was no reason to patent primary sequences. They stressed the principle of free access to raw data in this ﬁeld that UNESCO shared. However, they agreed that innovations introduced after sequencing could be patented. Others were forceful in arguing that if the human genome was altogether withdrawn from patenting (such as mathematical theories or surgical procedures), then there would be no incentive for the public and private sectors to invest in R&I. A third group believed that the only way out was to design a sui generis system of patenting. This was not further explored and the symposium was inconclusive.
In 1999, Koïchiro Matsuura, a diplomat and former ambassador of Japan to France, was elected director general of UNESCO. Some of the program initiated by his predecessor had been downsized in terms of funding and stafﬁng, if not discarded. By far, this was not the case of the bioethics program that was well endowed and became over the year 2000 one of the priorities of the organization, indeed the ﬁrst priority of the social and human sciences program. He soon took the initiative to call a major conference to debate over the patenting of the human genome that took place in Paris in 2001.
It was timely indeed because the subject ran high on the international political agenda. Since the end of the 1990s, the debate was heated with positions taken at the national and international levels:
(a) Ministers of various countries took a stand against the patenting of the human genome.
(b) The Okinawa Communiqué of the 2000 G8 Summit addressed the issue.
(c) The General Assembly of the UN at the Millennium Summit in 2000 took sides to ensure free access to information on the human genome sequences (Resolution 55/2, Paragraph 23, 6th indentation).
The 2001 symposium’s objective was to untangle this ball of problems and not to cut the Gordian knot. Considering the role they played in this context, the World Intellectual Property Organization (WIPO) and the World Trade Organization (WTO) were associated at this event, attended by 150 participants from 60 countries. The deliberations of the symposium are still relevant after some 15 years. The ﬁnal report was elaborated by Justice Michael Kirby (Australia) and has been one of the most quoted reports of the IBC (UNESCO 2002).
There was no consensus then over this issue and still none nowadays: the scientiﬁc communities and specialists in intellectual property were split (in particular the USA and the UK vs. Europe, although Europe and China for that matter modiﬁed their positions soon after 2001), the political communities were split (mainly along a North/South line), and even the IBC expressed diverging views. Six months after the International Symposium, at its 2001 session, the IBC adopted an Advice on the Patentability of the Human Genome drafted by Judge Patrick Robinson (Jamaica) stating that:
(1) After considering this issue, [the IBC] is of the view that there are strong ethical grounds for excluding the human genome from patentability; (2) Further recommends that the World Trade Organization (WTO), in its review of the TRIPS Agreement, clarify that, in accordance with the provision of Article 27(2), the human genome is not patentable (.. .).
Round Table Of Science Ministers On Bioethics (2001)
The director general decided that one of the main features of the 2001 General Conference would be a Round Table of Ministers of Science on bioethics. This met great success since it was attended by over 100 ministers of science from all over the world (Bioethics: International Implications – Proceedings of the Round Table of Ministers of Science 2003). The communiqué adopted at the close of the Round Table reiterated major commitments of states such as: protection of human rights and freedoms and promotion of the freedom of research, establishment of national ethics committees with a duty to advise decision makers, and promotion of informed, pluralistic public debate to foster a democratic citizenship.
They welcomed the developments of UNESCO’s program, in particular the initiative of establishing an interagency committee on bioethics (UN bodies and specialized agencies as well as of the Council of Europe, European Commission, OECD, and regional organizations). UNESCO had taken the lead, prepared the draft terms of reference, offered to ensure the secretariat of this interagency committee, and hosted the ﬁrst meeting in September 2001. This interagency committee still meets successfully.
The Round Table also formulated at least one new commitment: the creation of an international fund for education and training, research, and dissemination of knowledge in bioethics. This commitment was never followed up by action, since governments were increasingly reluctant to general funding (UNESCO 2003).
International Declaration On Human Genetic Data (2003) And Fostering Creation Of National Ethics Committees
In 2000, Koïchiro Matsuura had in mind the elaboration of a new instrument. Some of the proposals that had been aired were embryonic stem-cell research, proteomics, and use of human cells for research and other purposes, all three most topical. After careful consideration and consultations, Ryuichi Ida, president of the IBC, advised the director general to select the issue of human genetic data. The rationale was the following: this had already appeared as a crucial question while examining the human genome; it linked in a broad way with proteomics and the use of human cells; and the IBC was already preparing a report on conﬁdentiality and genetic data (2000) that highlighted the challenging aspects of human genetic data to human rights (conﬁdentiality, privacy, consent, storage, destruction, anonymity, cross-border ﬂow of data, commodiﬁcation of genetic data banks).
As a consequence, the IBC prepared in 2002 a report entitled “Human Genetic Data: Preliminary Study by the IBC on Its Collection, Processing, Storage and Use.” The 2000 report and this one covered most of the questions raised in the preliminary draft of an international declaration on human genetic data, produced by the IBC in 2003.
The same procedure was followed as for the Universal Declaration on the Human Genome and Human Rights. The Committee of Governmental Experts that met in 2003 had mixed feelings about this new instrument. Some European countries considered that human genetic data are medical data which are usually the matter of national legislation and regulation. In this respect, they dreaded that this instrument would not be up to the European data protection standards and would interfere with the mandate of national data protection commissioners.
Few countries, in particular Germany, were worried that UNESCO would adopt stipulations about the use of human genetic data in forensic medicine and criminal law. Another thorny point was the use of genetic data to establish ﬁliations. Indeed the preliminary draft mentioned that paternity testing should be allowed only after taking into account the superior interest of a child. Since this would have interfered with some national legislation, Article I.c introduced an explicit mention that the declaration would not apply to investigation, detection, and prosecution of criminal offenses and in parentage testing. Few other countries had a problem with the form of the future declaration. For instance, the USA (at that time back to UNESCO as a member state) requested and got support in changing “shall” into “should” throughout the text arguing that a declaration is not a binding instrument.
However, in general, the preliminary draft was welcomed by most countries. Countries of the South appreciated especially Article 19 about the sharing of beneﬁts in scientiﬁc and economic terms. A drafting group was set up, headed by the French representative, in order to consider all the amendments to the text and iron out various divergences. It was adopted unanimously and by acclamation by the General Conference in 2003 (UNESCO 2004).
It is a fairly speciﬁc, far-reaching declaration that had anticipated several questions that are becoming relevant in the 2010s, such as:
- The importance of complex educational, environmental, and personal factors in a person’s genetic makeup (Article 3)
- The cultural signiﬁcance of human genetic data for persons and groups (Article 4.iv)
- Cross-border ﬂow of data (Article 18)
- Sharing of beneﬁts (Article 19)
Undoubtedly, ethics of science had gained momentum in the 1990s all around the world, maybe partly because of the inﬂuence of the IBC and the impetus given by the Universal Declaration on the Human Genome and Human Rights as well as the adoption of the Convention on Human Rights and Biomedicine (1997). Several countries encountered problems that they were not prepared to tackle, for instance, HIV clinical trials involving human persons or collection of blood samples without consent of persons involved, just to mention two. They planned to establish ethics committees for such purposes and relied on Article 16 of the Universal Declaration on the Human Genome and Human Rights and even more so on Article 6.b of the International Declaration on Human Genetic Data. UNESCO cooperated with many emerging countries and countries of the South to create independent, multidisciplinary, and pluralist national ethics committees.
Universal Declaration On Bioethics And Human Rights (2005) And Fostering Bioethics Education
In the ﬁrst decade of the year 2000, UNESCO took a number of signiﬁcant standard-setting initiatives, not only in bioethics but also in the area of culture. This was due to the director general’s determination to achieve UNESCO’s mandate in concluding international agreements. However, one should underline that he had strong political backing. Indeed, the 2001 General Conference, with the support of the Round Table of Ministers of Science (see above section “International Declaration on Human Genetic Data (2003) and Fostering Creation of National Ethics Committees”), had invited him to study the possibility of elaborating an international instrument on bioethics, and in 2002, the IBC carried out a feasibility study. President Jacques Chirac, in his address to the General Conference in 2003, referred to the conclusions reached by the IBC and IGBC and called for a universal declaration based on clear ethical standards to serve humankind. The feasibility study was positive about the elaboration of an instrument on bioethics, provided that it would not be binding.
In 2004, Michèle Stanton-Jean, historian and former vice-minister of health of Canada and president of the IBC, undertook to formulate and develop this universal, global instrument, hand in hand with Henk ten Have, a well-known Dutch bioethicist, who had been appointed secretary-general of the IBC. Having participated, with some other key members of the IBC, at the elaboration of the two previous UNESCO instruments with their ups and downs, this was certainly an asset.
The IGBC proved to be indispensable in the preparation of this instrument. Indeed, it voiced criticism that could have been expressed at a much later stage. For instance, fairly soon after the beginnings of the process, India stated that bioethics were loosely related to human rights and disagreed about the title linking bioethics to human rights. Brazil, to give another example, expected a broader conception of bioethics encompassing burning social concerns such as poverty, hunger, disease, health and sanitation, illiteracy, inequalities, environmental degradation, etc. This upstream interaction between the IBC (independent experts) and the IGBC (government experts) allowed anticipating over contentious issues. As a matter of fact, the breadth of bioethics was one of the points discussed throughout the elaboration of the declaration up to its adoption. The principle of social solidarity and health (Article 14) and protection of the environment, the biosphere, and biodiversity (Article 17) were thus formulated to address these concerns.
The IBC held many hearings of experts as well as representatives of religions and major spiritual beliefs and took into account their position. In parallel, Michèle Stanton-Jean and Henk ten Have presented orally at many regional and national meetings and in writing the various versions of the future declaration to a variety of audiences, academic, political, and grassroots, disseminated it widely, including on the web, and encouraged discussions. This proved to be a high-yielding strategy in order to build consensus and foster the appropriation of the future universal declaration by stakeholders.
The adoption of the Universal Declaration on Bioethics and Human Rights by the General Conference in 2005 was a landmark (Ten Have et al. 2009). With the two previous declarations, it provides a solid basis for states to legislate and regulate in the area of bioethics. The three declarations can be understood as a triptych: each panel has its logical composition and the three put together present a larger perspective where elements correspond with one another and complement one another.
Under the presidency of Nouzha Guessous Idrissi, professor at the Faculty of Medicine, University of Casablanca (Morocco), the IBC entered a fruitful stage of stocktaking. Regional meetings were organized throughout the world in order to encourage dissemination of and discussions on the principles in the universal declaration. In addition, Henk ten Have widened the cooperation with member states which were eager to create national ethics committees. On the basis of the three declarations that provided a useful ground, he also launched a global ethics education and training program highly appreciated worldwide.
First, one of the main achievements of UNESCO was to bring bioethics to the attention of the international community and keep the subject alive on the political agenda. Second, by encouraging public debate around the world, UNESCO contributed to the empowerment of citizens over bioethical issues. Third, once more, UNESCO proved to skeptics who are doubtful about the possibility of reaching international agreement over contentious issues that it is feasible when the three T’s are united: truth, trust, and transparency. Forth, standard-setting action is not futile and UNESCO’s efforts to forge the three declarations were worthwhile, considering that they have been the basis for legislation in several countries and are frequently quoted (US Supreme Court of Justice 2013).
No wonder the legislative bodies of UNESCO referred to the bioethics program as one of the “success stories” at the turn of the century. Yet, since 2010, this program is losing momentum and it no longer captures the attention of the decision makers nor does it has high priority or visibility. Of course, funding is declining at UNESCO as well as in other international organizations. Time might have come to envisage the establishment of an independent UN body with a mandate over ethics of science and technologies.
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