ABSTRACT
A property analysis of the U.K. Biobank reveals a new imagination of the genomic biobank as a national common-pool resource. U.K. Biobank's treatment of property and governance exhibit both strengths and weaknesses that may be instructive to genome project planners around the world.
Subject(s)
Biological Specimen Banks/organization & administration , Community-Institutional Relations , Databases, Genetic/legislation & jurisprudence , Genome, Human , Ownership/legislation & jurisprudence , Tissue Donors/legislation & jurisprudence , Adult , Aged , Biological Specimen Banks/ethics , Biological Specimen Banks/legislation & jurisprudence , Databases, Genetic/ethics , Genetic Research , Genome, Human/ethics , Humans , Middle Aged , Models, Organizational , Ownership/ethics , Politics , Tissue Donors/ethics , United KingdomABSTRACT
Apocalyptic views on the natural order, chimeras and genetic engineering should not detract from the fact that medical research, similar to the promotion of health, is a public good. Genomics crosses all species, thereby requiring a global approach that respects human rights and public health priorities. Public trust and public participation in research demand clear stewardship as well as transparent and accountable oversight. Characterizing fundamental genomic data as a public resource might counterbalance the current overemphasis on individual rights but this will not be simple. It is only through an attachment to justice and solidarity that the dignity and well-being of persons, both as humans and as citizens, can truly be fostered.
Subject(s)
Genome, Human/ethics , Genomics/ethics , Genetics, Population , Genomics/trends , Humans , Philosophy, Medical , Social Values , Social WelfareABSTRACT
We are at a time of unprecedented increase in knowledge of rapidly changing technology. Such biotechnology especially when it involves human subjects raises complex ethical, legal, social and religious issues. A World Health Organization expert consultation concluded that "genetics advances will only be acceptable if their application is carried out ethically, with due regard to autonomy, justice, education and the beliefs and resources of each nation and community." Public health authorities are increasingly concerned by the high rate of births with genetic disorders especially in developing countries where Muslims are a majority. Therefore, it is imperative to scrutinize the available methods of prevention and management of genetic disorders. A minimum level of cultural awareness is a necessary prerequisite for the delivery of care that is culturally sensitive, especially in Islamic countries. Islam presents a complete moral, ethical, and medical framework, it is a religion which encompasses the secular with the spiritual, the mundane with the celestial and hence forms the basis of the ethical, moral and even juridical attitudes and laws towards any problem or situation. Islamic teachings carry a great deal of instructions for health promotion and disease prevention including hereditary and genetic disorders, therefore, we will discuss how these teachings play an important role in the diagnostic, management and preventive measures including: genomic research; population genetic screening pre-marital screening, pre-implantation genetic diagnosis; assisted reproduction technology; stem cell therapy; genetic counseling and others.
Subject(s)
Genetic Counseling/ethics , Genetic Diseases, Inborn/prevention & control , Genome, Human/ethics , Islam , Religion and Medicine , Female , Genetic Counseling/standards , Genetics/ethics , Genetics/standards , Guidelines as Topic , Humans , Male , Middle EastSubject(s)
Genome, Human , Individuality , Ethics Committees, Research , Genetic Privacy/ethics , Genetic Privacy/legislation & jurisprudence , Genome, Human/ethics , Humans , Informed Consent , Medical Records/legislation & jurisprudence , Mutation , National Institutes of Health (U.S.) , Patient Selection , Risk , Sequence Analysis, DNA , United StatesSubject(s)
Humans , Genome, Human/ethics , Health Facilities/legislation & jurisprudence , Genetic Research/ethics , Ethics, Research , Germany , Canada , Spain , United States , MexicoSubject(s)
Humans , Genome, Human/ethics , Genetics, Medical/ethics , Prejudice , Bioethical Issues , SpainSubject(s)
Humans , Databases, Genetic/ethics , Confidentiality/ethics , Genome, Human/ethics , Bioethical Issues , UNESCO , Latin America , Europe , Africa , AsiaSubject(s)
Humans , Personal Autonomy , Informed Consent/ethics , Human Rights , Aborted Fetus/transplantation , Genome, Human/ethics , Tissue Transplantation/ethics , Ethics, Research , Abortion, Induced/ethics , Spain , Euthanasia/ethics , Persons with Mental Disabilities , Morals , Reproductive Techniques/ethicsABSTRACT
(1) Encounter with the genome. (2) Difficulties in the path. (3) Legal and ethical implications. (4) Patenting genes. (5) The genome and evolution. (6) An adjunct to medicine or a new world? (7) Forbidden territory or the next step for humanity? (8) Informed decisions.