Genetic Ethics

This book considers all aspects of privacy and security relating to an individual's DNA, with a concentration on fundamental human rights as well as specific cases and examples, in addressing greater security and privacy in the modern world.

The science and technology of genetic testing is rapidly advancing with the consequences that genetic testing may well offer the prospect of being able to detect the onset of future disabilities. Some recent research also indicates that certain behavioural profiles may have a strong genetic basis, such as the determination to succeed and win or the propensity for risk-taking, which may be of interest to third parties. However, as this technology becomes more prevalent there is a danger that the genetic (...) information may be misused by entities such as employers, insurance companies, educational facilities, and finance companies and that people with particular genetic profiles may be discriminated against.This book explores the different types and the potential uses of genetic testing. The book highlights the ethical and legal dilemmas and the challenges arising as a result of emerging and rapidly advancing genetic science. Chapters in the book assess the importance and impact of the US Genetic Information Non-Discrimination Act (GINA) in the employment and health insurance contexts asking whether it is proving to be an effective tool in addressing the issue of genetic discrimination and alleviating individuals' fears of discrimination. The book then goes on to make the case for regulation at the European Union level in order to protect the privacy of genetic information and to prevent the discriminatory use of genetic information in Europe. It considers what can be learnt from the experience of the US in addressing ethical and legal issues as well as the impact that the UN Convention on the Rights of Persons with Disabilities is having on this debate within the EU. (shrink)

What is the relationship between the position that anonymous gamete donation is wrong (i.e. the anti-anonymity position) and the position that all gamete donation is wrong (i.e. the anti-donation position)? Some argue that people who accept the anti-anonymity position should also accept the anti-donation position on the grounds that the two positions share the same main arguments. But that’s not true. One argument in favor of anti-anonymity does not generate genuine dialectical pressure to accept the anti-donation position. The other anti-anonymity (...) arguments do generate dialectical pressure, but not in a way that pushes toward the anti-donation position. Instead, they push toward what we might call the ‘pro-known-donation’ position. So, either there is no dialectical pressure or, where there is, it doesn’t flow toward the anti-donation position. (shrink)

An introduction to playing god -- The birth and explosive growth of GMOs -- Human cloning -- Messing with mother nature : the first GMO sapiens -- Build-a-baby better via genetics -- DIY guide to creating GMO sapiens -- Eugenics and transhumanism -- Cultural views on human genetic modification -- GMO sapiens today and tomorrow.

1. Introduction -- 2. Philosophy of genetic technology and its relation to ethical theories -- 3. Ethics of genetic technology in plants and animals -- 4. Ethics of genetic technology in humans -- 5. Conclusion.

The governance of human (germline) genome modification at the international and transnational level -- The regulation of human germline genome modification in Canada (E Kleiderman) -- The regulation of human germline genome modification in the United States (Kerry Macintosh) -- The regulation of human germline genome modification in Mexico (M Medina Arellano) -- The regulation of human germline genome modification in Europe (J Almqvist, C Romano) -- The regulation of human germline genome modification in the United Kingdom (J Lawford Davies) (...) -- The regulation of human germline genome modification in Germany (T Faltus). (shrink)

La révision imminente de la loi bioéthique ouvre un moment où tout est possible. Ecrit par un juriste universitaire spécialisé dans les questions médicales et impliqué dans la pratique quasi quotidienne de l'éthique clinique depuis des années, cet essai éclaire l'urgence éthique qu'imposent certaines situations humaines souvent dramatiques. Face aux questions si complexes qu'elles soulèvent, il convie à abandonner le manteau du péremptoire et à endosser la responsabilité du faire réfléchir. Fin de vie, assistance médicale à la procréation, gestation pour (...) autrui animent le débat public et la controverse. Mais interruptions volontaires de grossesse par exemple pour raisons psychosociales, ou contraception définitive, sont plus méconnues. La volonté est de les sortir de l'obscurité où éthiquement elles se meurent. Le ton de cet essai ne se veut pas revendicatif mais résolument tourné vers la réalité des situations, la confrontation des arguments et les propositions concrètes. (shrink)

For the first time in the history of civilization, humans have procured the power to rewrite nature's book of life. Following the discovery of CRISPR and other key scientific developments at the dawn of the twenty-first century, humankind has-for better or worse-reached the Rubicon of precise genetic manipulation, which existed only in science fiction until now. Those familiar with genome editing understand its colossal power and potential to become a global transformative agent that surpasses the impact of electricity, the atomic (...) bomb, or the Internet. REWRITING NATURE is an interdisciplinary odyssey through the law, science, and policy of genome editing-the most significant breakthrough of our generation. The volume addresses a critical need to bridge gaps between law, science, and policy, and challenges the conventional, false dichotomy frequently associated with mutually exclusive normative roles for science and law. Through exploration of heuristic inquiries into an array of interdisciplinary fields, the book seeks to ignite thoughtful dialogues about authentic-rather than manufactured or sensationalized-issues raised by the technology. This timely resource is intended for keen audiences focused on venturing beyond the headlines and talking points to develop a deeper understanding of the prospects and challenges of genome editing. (shrink)