Genomics, society and policy: GSP ; a peer reviewed academic journal
ISSN: 1746-5354
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ISSN: 1746-5354
Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With 'large-scale biobanking' a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society.
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Biobanks include biological samples and attached databases. Human biobanks occur in research, technological development and medical activities. Population genomics is highly dependent on the availability of large biobanks. Ethical issues must be considered: protecting the rights of those people whose samples or data are in biobanks (information, autonomy, confidentiality, protection of private life), assuring the non-commercial use of human body elements and the optimal use of samples and data. They balance other issues, such as protecting the rights of researchers and companies, allowing long-term use of biobanks while detailed information on future uses is not available. At the level of populations, the traditional form of informed consent is challenged. Other dimensions relate to the rights of a group as such, in addition to individual rights. Conditions of return of results and/or benefit to a population need to be defined. With 'large-scale biobanking' a marked trend in genomics, new societal dimensions appear, regarding communication, debate, regulation, societal control and valorization of such large biobanks. Exploring how genomics can help health sector biobanks to become more rationally constituted and exploited is an interesting perspective. For example, evaluating how genomic approaches can help in optimizing haematopoietic stem cell donor registries using new markers and high-throughput techniques to increase immunogenetic variability in such registries is a challenge currently being addressed. Ethical issues in such contexts are important, as not only individual decisions or projects are concerned, but also national policies in the international arena and organization of democratic debate about science, medicine and society.
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In: Genomics, society and policy: GSP ; a peer reviewed academic journal, Band 6, Heft 2
ISSN: 1746-5354
Searching for the specific contribution of the life sciences to global justice in agriculture and food, one is faced with six global problems that haunt the world today. These are: population growth (9.2 billion by 2050); the gap between poor and rich peoples; hunger and obesity; increasing environmental pressures; climate change; and instable power relations and systems. Most of them seem to have a strong connection with the dominant system in agriculture which is high input and capital- and resource-intensive with high energetic output (food), at the cost of other factors important for sustainable development, like food quality, fresh water and liveable temperatures. However, beside this dominant system there is a plurality of other, often local, agricultural systems that don't have these disadvantages or have them in a lesser degree, and they are in particular located in the South. The current prominent perspectives on global justice, like the consequence-oriented one of Peter Singer and the rights- and institutions-oriented one of Thomas Pogge, neglect the importance of plural and local agricultural and food practices for sustainable and fair global development. Partly complementary to these perspectives, Amartya Sen has developed a capabilities approach that emphasises human capacities and the role of democracy. In complementing his approach we develop an agency- and practice-oriented perspective that stresses the importance of networking the agricultural practices that strive to enhance the quantity and quality of food systems. The tasks of the life sciences for agriculture and food would then be to develop technologies that take into account the plural practices of the poor in the production, processing and consumption of food. This whole chain oriented approach requires from life scientists more than just doing research in laboratories; their task is also to connect their laboratory work with farmers' practices and experiments.
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In: http://www.lsspjournal.com/content/6/2/13
Abstract Searching for the specific contribution of the life sciences to global justice in agriculture and food, one is faced with six global problems that haunt the world today. These are: population growth (9.2 billion by 2050); the gap between poor and rich peoples; hunger and obesity; increasing environmental pressures; climate change; and instable power relations and systems. Most of them seem to have a strong connection with the dominant system in agriculture which is high input and capital- and resource-intensive with high energetic output (food), at the cost of other factors important for sustainable development, like food quality, fresh water and liveable temperatures. However, beside this dominant system there is a plurality of other, often local, agricultural systems that don't have these disadvantages or have them in a lesser degree, and they are in particular located in the South. The current prominent perspectives on global justice, like the consequence-oriented one of Peter Singer and the rights- and institutions-oriented one of Thomas Pogge, neglect the importance of plural and local agricultural and food practices for sustainable and fair global development. Partly complementary to these perspectives, Amartya Sen has developed a capabilities approach that emphasises human capacities and the role of democracy. In complementing his approach we develop an agency- and practice-oriented perspective that stresses the importance of networking the agricultural practices that strive to enhance the quantity and quality of food systems. The tasks of the life sciences for agriculture and food would then be to develop technologies that take into account the plural practices of the poor in the production, processing and consumption of food. This whole chain oriented approach requires from life scientists more than just doing research in laboratories; their task is also to connect their laboratory work with farmers' practices and experiments.
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In: Population Genomics
Part I: Introduction -- Marine Population Genomics: Challenges and Opportunities -- Part II: Marine Microbes -- Part III: Genetic Diversity, Population Structure, and Biogeography -- Population Genomics of Marine Zooplankton -- Population Genomics of Early-Splitting Lineages of Metazoans -- Population Genomics and Biogeography of the Northern Acorn Barnacle (Semibalanus balanoides) Using Pooled Sequencing Approaches -- Part IV: Seascape Genomics -- Seascape Genomics: Contextualizing Adaptive and Neutral Genomic Variation in the Ocean Environment -- Part V: Adaptation, Acclimation, and Speciation -- Clinal Adaptation in the Marine Environment -- The Population Genomics of Parallel Adaptation: Lessons from Threespine Stickleback -- Mechanisms of Adaptive Divergence and Speciation in Littorina saxatilis: Integrating Knowledge from Ecology and Genetics with New Data Emerging from Genomic Studies -- Ecological Speciation in Corals -- Environmental Epigenomics and Its Applications in Marine Organisms -- Part VI: Protection, Conservation, and Management of Marine Organisms -- Marine Invasion Genomics: Revealing Ecological and Evolutionary Consequences of Biological Invasions -- Population Genomics Applied to Fishery Management and Conservation -- Marine Conservation and Marine Protected Areas -- Index.
In: Public Health Genomics, Band 12, Heft 1, S. 59-65
ISSN: 1662-8063
Argentina's population numbers about 40 million, with main genetic contributions from Europeans, Amerindians and, to a much lower extent, West Africans. There is a traditional health care system publicly funded coexisting with a social security system and a for-profit private sector. Clinical genetic services include about 40 units in public hospitals dealing mainly with pediatric genetics. The most conspicuous public policies in genetics are newborn screening and folic acid fortification of flour. Genetics/genomics research is funded by state agencies and is conducted in several institutes and centers. Clinical genetics research occurs in public hospitals and deals primarily with congenital syndromes. While there are no defined government policies in the public application of genomics, there have been initiatives to improve the provision of clinical genetic services countrywide. The main hurdles for applying genetics in health care are a fragmented, inefficient, and inequitable health system, facing large unmet needs in infectious diseases, malnutrition, prenatal and newborn care, deficient education in genetics, and lack of explicit public policies in genetic health care and governmental regulations. Overcoming these obstacles requires increase in government funding and improvement of the efficiency of the public health system and its genetic services. Further, there must be concerted efforts to ensure equitable access to the latter. Interactions should be promoted between clinical geneticists, public health officers, primary health care personnel and parent/patient organizations on the use of genetics/genomics in public health, as well as genetics education of health professionals, the public and decision makers, and development of the capacity of the state to regulate properly the application of genetic/genomic technologies to public health.
In: Annual Review of Statistics and Its Application, Band 5, Heft 1, S. 169-182
SSRN
In: Public Health Genomics, Band 12, Heft 1, S. 53-58
ISSN: 1662-8063
Brazil represents half of South America and one third of Latin America, having more than 186 million inhabitants. After China and India it is the third largest developing country in the world. The wealth is unequally distributed among the states and among the people. Brazil has a large and complex health care system. A Universal Public Health System (SUS: Sistema SPACEnico de Saúde) covers the medical expenses for 80% of the population. The genetic structure of the population is very complex, including a large proportion of tri- hybrid persons, genetic isolates, and a panmictic large majority. Genetic services are offered at 64 genetic centers, half of them public and free. Nationwide networks are operating for inborn errors of metabolism, oncogenetics, and craniofacial anomalies. The Brazilian Society of Medical Genetics (SBGM) has granted 120 board certifications since 1986, and 7 recognized residences in medical genetics are operating in the country. Three main public health actions promoted by the federal government have been undertaken in the last decade, ultimately aimed at the prevention of birth defects. Since 1999, birth defects are reported for all 3 million annual live births, several vaccination strategies aim at the eradication of rubella, and wheat and maize flours are fortified with folic acid. Currently, the government distributes over 2 million US dollars to finance 14 research projects aimed at providing the basis for the adequate prevention and care of genetics disorders through the SUS. Continuity of this proactive attitude of the government in the area of genomics in public health is desired.
In: Journal of risk research: the official journal of the Society for Risk Analysis Europe and the Society for Risk Analysis Japan, Band 21, Heft 2, S. 117-128
ISSN: 1466-4461
In: Public health genomics, Band 13, Heft 5, S. 269-275
ISSN: 1662-8063
China is a multicultural country that has arisen from its 56 ethnicities, with a diverse population of over 1.3 billion people and an imbalanced economic development. The health care system in China is tending to be overall funded through urban and rural health insurance plans. Although China has invested in the basic research of genome science, public health genomics-related programs and services in China started late. Prenatal screening is offered as part of routine clinical prenatal services and is free of charge in some economically advanced cities. Newborn screening programs are mandated throughout the country but vary between provinces and territories in terms of organization and diseases screened for; most screening tests are paid by out-of-pocket expenses. Genetic tests are encouraged while there are only one accredited state laboratory and few territorial laboratories in China. Further national genomics policies are needed in China in a range of genetic issues and infrastructure of public health genomics. Careful measurement is essential to understanding the nature and scale of the task ahead.