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Genomics and Public Health

Legal and Socio-Ethical Perspectives

Edited by Bartha Maria Knoppers

When genomics and public health are integrated into society, it will create as many responsibilities as rights for citizens, researchers, and decision makers. Indeed, the expression of genetic risk factors in both common and infectious diseases is of great interest to public health. Policy development in this area then needs to tackle crucial themes such as: research and its application to public health and genomic medicine, the authority of the state, the right to privacy, and the roles and responsibilities of citizens and the State.
Considering the current fears of a world-wide pandemic, this book is a timely and insightful exploration of both research possibilities and the role of the state. It will help to understand the limits of possible state access to biobanks and data. It examines the issue of the possible use of newborn screening programmes by public health authorities. It also attempts to understand the protection of individual privacy and the public interest in the promotion of health and the prevention of disease. Moreover, do citizens have a say? Will public attitudes be different towards research in public health genomics compared to genetic testing?

Mary Donnelly and Maeve McDonagh

‘refuge in consent’, 10 it shows that the normative weight of the consent requirement differs depending on the context for the health research in question. 11 This more substantive approach to the consent requirement is reflected in the research exemption, which allows for a more nuanced balancing of

Gianluca Montanari Vergallo

termination of pregnancy itself (according to article 9). Legislators did so in an effort to balance the rights of objecting gynaecologists against the prerogatives of women who wish to have an abortion. If the British model had been followed, particularly the Conscientious Objection Bill, which seeks to

George P. Smith II

The eight chapters within this volume are structured around an exploration of the fundamental issues in the field of biomedical human rights: dignity and autonomy in not only procreative liberties but throughout the complete cycle of life and death, the freedom of scientific inquiry into the new biotechnological methods of collaborative reproduction, the right to genetic integrity at birth and throughout life, and the equitable right to health or access to health care benefits during life and old age. All these central issues are tested, of necessity, but utilitarian principles which, in turn, force the templates for decision making, evaluate the gravity of harm deriving from a particular human right and its recognition and enforcement measured against the utility of the social, economic, or cultural good accruing from recognition of such a right in the first instance. Ultimately, cultural relativism will be seen - more often than universality - as the determinative point of balance.
This volume not only informs the ongoing debate on the role of human rights in biomedicine, but will also provide enlightened responses to the troublesome issues presented in this new age of biotechnology.

Mette Hartlev

© Koninklijke Brill NV, Leiden, 2007 DOI: 10.1163/092902707X199122 News and Views Striking the Right Balance: Patient’s Rights and Opposing Interests with Regard to Health Information Mette Hartlev Associate Professor, PhD, LL.D Faculty of Law, University of Copenhagen Abstract In this article

Evelien Delbeke

© Koninklijke Brill NV, Leiden, 2011 DOI: 10.1163/157180911X565191 European Journal of Health Law 18 (2011) 149-162 The Way Assisted Suicide Is Legalised: Balancing a Medical Framework against a Demedicalised Model Evelien Delbeke * Doctoral researcher, Faculty of Law, University

Herman Nys

balance between the protection of professional interests, and the protection of patients’ interests. 1 OJ 2018, L 173/25-34. 2 OJ 2005, L 255/22. 3 See for a critical assessment, R. Baeten, Was the Exclusion of Health Care from the Services Directive a Pyrrhic Victory? A Proportionality Test on

Herman Nys

, to shift the legal and financial liability onto the healthcare specialist or healthcare institution in question would likewise not be acceptable. Moreover, the question of home birth concerned not only the woman’s, but also the State’s choice; at the same time, it was necessary to balance the

Joseph Dute

aim of protecting the rights and reputation of Dr S. It therefore remains to be determined whether the interference was “necessary in a democratic society” and whether the balancing exercise undertaken by the domestic courts was in conformity with the criteria laid down in the Court’s case-law. The

Claire Rommelaere

Introduction In daily healthcare practice, there are numerous occasions where a health professional wonders whether the patient facing him understands what he is being said or is able to balance the advantages and disadvantages of a decision, regarding his or her specific situation. If this is the