M. A. Hamdan Senior Advisor/ Arab Open University TWAS Vice President/ Arab Region Presented at TWAS-ARO Young Scientists Training Workshop: Ethics in Life Sciences Research and Publications Alexandria 26-27 Nov. 2017 1
'Ethics' can be a complex term – it’s not as simple as it might seem, and it’s rarely black and white. It can mean many things to many people, and if someone is unscrupulous, the meaning can be manipulated. 2
However, there is overall agreement on a number of very specific ethical norms. If you violate one of them, your career can suffer, your lab can suffer. But because ethical violations undermine the trust between science and policymakers, between science and the public, they can damage the entire research enterprise. For this reason, basic ethical principles are just as important to our work as the scientific method. 3
And yet, increasingly, global scientific bodies and science leaders are taking a broader look at the idea of ethics. There is an emerging consensus, and it is acutely important in the fields of biomedicine and biomedical technology, where the world is changing so quickly and becoming so much more complex. 4
When we talk about biomedical ethics, it's obvious that we are touching on topics of medicine, life sciences and associated technologies. But this realm of ethics also has social, legal and environmental dimensions, with direct applications in education and training, and in the relationships with policymakers and the public. Obviously, this has been of great concern to relevant international organizations including UNESCO, WHO, TWAS and other science bodies. In this presentation we shall focus on UNESCO’s Universal Declarations on Bioethics and Human Rights (UDBHR). 5
UNESCO's International Bioethics Committee issued its Universal Declaration on Human Genome and Human Rights (UDHGHR) in 1997, and in 2003, it issued its International Declaration on Human Genetic Data (IDHGD). More recently, in 2005, the UNESCO General Conference adopted the Universal Declaration on Bioethics and Human Rights (UDBHR), a far-reaching document that continues to exert a strong influence today. 6
UDBHR takes a broad view of ethics in biomedicine, stating the following aims: Article 2 (a) to provide a universal framework of principles and procedures to guide States in the formulation of their legislation, policies or other instruments in the field of bioethics; (b) to guide the actions of individuals, groups, communities, institutions and corporations, public and private; 7
(c) to promote respect for human dignity and protect human rights, by ensuring respect for the life of human beings, and fundamental freedoms, consistent with international human rights law; (d) to recognize the importance of freedom of scientific research and the benefits derived from scientific and technological developments, while stressing the need for such research and developments to occur within the framework of ethical principles set out in this Declaration and to respect human dignity, human rights and fundamental freedoms. 8
(e) to foster multidisciplinary and pluralistic dialogue about bioethical issues between all stakeholders and within society as a whole; (f) to promote equitable access to medical, scientific and technological developments as well as the greatest possible flow and the rapid sharing of knowledge concerning those developments and the sharing of benefits, with particular attention to the needs of developing countries; 9
(g) to safeguard and promote the interests of the present and future generations; (h) to safeguard and promote the interests of the present and future generations. 10
The Declaration delineates in fifteen of its articles the (15) ethical principles listed in table below: Principles of UDBHR Art.3-Human Dignity and human Art.11-non-discrimination and non- rights stigmatization Art.4-Benefit and harm Art.12-Respect for cultural diversity and pluralism Art.5-Autonomy and individual Art.13-Solidarity and cooperation responsibility Art.6-Consent Art.14-Social responsibility and health Art.7-Persons without the capacity to Art.15-Sharing of benefits consent Art.8-Respect for human vulnerability Art.16-Protecting future generations and personal integrity Art.9-Privacy and confidentiality Art.17-Protection of the environment, the biosphere and biodiversity Art.10-Equality, justice and equity 11
UDBHR goes on to present four articles on the application of the principles set forth: Article 18 – Decision-making and addressing bioethical issues 1. Article 19 – Ethics committees 2. Article 20 – Risk assessment and management 3. Article 21 - Transnational practices 4. We shall, in this context, consider only one most important article namely: Art. 18: Decision-Making and Addressing Bioethical Issues . 1. Professionalism, honesty, integrity and transparency in decision-making should be promoted, in particular declarations of all conflicts of interest and appropriate sharing of knowledge. Every endeavour should be made to use the best available scientific knowledge and methodology in addressing and periodically reviewing bioethical issues. 2. Persons and professionals concerned and society as a whole should be engaged in dialogue on a regular basis. 3. Opportunities for informed pluralistic public debate, seeking the expression of all relevant opinions, should be promoted. 12
Professionalism, honesty, integrity and transparency are basic ethical values that should be promoted in every decision or practice related to medicine, life sciences and associated technologies. Hence, Article 18 may be considered significantly relevant to each of the principles set forth in this Declaration. The ethical principles embodied in Article 18 relate directly to a number of the aims of the Declaration as expressed earlier. 13
In particular, honesty is a fundamental element in ethics. In science, that means you are honest about your research results. You do not take a colleague's research work and claim it as your own. You don't do research on human subjects without their fully informed consent. You do not let your financial interests colour your research results. We shall demonstrate later in this presentation some worldwide findings on the issue of honesty.
Ethical reflection should be an integral part of the process of scientific and technological developments, and hence bioethics should play a predominant role in the choices and decisions that need to be made concerning issues arising from such developments. Hence, the process of decision-making, and the individuals and institutions involved in this process, should be characterized by professionalism, honesty, integrity and transparency. 15
Article 18 identifies six main obvious areas of application of the four characteristics (professionalism, honesty, integrity and transparency): declaration of all conflicts of interest; a) appropriate sharing of knowledge; b) using the best available scientific knowledge c) and methodology; periodic reviews; d) dialogue on a regular basis; e) Informed pluralistic public debate, seeking the f) expression of all relevant opinions. 16
Article 18 expresses ethical values in line with four articles of the Universal Declaration on the Human Genome and Human Rights (1997): Article 13 ‘The responsibilities inherent in the activities of researchers, including meticulousness, caution, intellectual honesty and integrity, …’ Article 18 ‘States should make every effort … to continue fostering the international dissemination of scientific knowledge …’ 17
Article 19 ‘… States should seek to encourage measures enabling … the free exchange of scientific knowledge in the areas of biology, genetics and medicine to be promoted. ’ Article 21 ‘States … should also undertake to facilitate on this subject an open international discussion, ensuring the free expression of various socio- cultural, religious and philosophical opinions. ’ 18
Article 18 also expresses ethical values in line with six articles of the International Declaration on Human Genetic Data (2003): Article 6: Procedures ‘ ... on the basis of transparent and ethically accepted procedures. ’ Article 15: Accuracy, reliability, quality and security ‘ They should exercise rigour, caution, honesty, and integrity... ’ Article 18: Circulation and international co-operation ‘ ..... to continue fostering the international dissemination of scientific knowledge …’ ‘… in order to foster the sharing of scientific knowledge …’ 19
Article 20: Monitoring and management framework ‘… based on the principles of independence, multidisciplinarity, pluralism and transparency …’ Article 23: Implementation ‘… to participate in generating and sharing scientific knowledge …’ Article 24: Ethics education, training and information ‘… aim at specific audiences, in particular researchers and members of ethics committees, or be addressed to the public at large. ’ 20
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