Genetic Research: Research into the cause, transmission, amelioration, elimination, or enhancement of inherited disorders and traits.Biological Specimen Banks: Facilities that collect, store, and distribute tissues, e.g., cell lines, microorganisms, blood, sperm, milk, breast tissue, for use by others. Other uses may include transplantation and comparison of diseased tissues in the identification of cancer.Minors: A person who has not attained the age at which full civil rights are accorded.Research Subjects: Persons who are enrolled in research studies or who are otherwise the subjects of research.Ethics, Research: The moral obligations governing the conduct of research. Used for discussions of research ethics as a general topic.Genetics, Medical: A subdiscipline of human genetics which entails the reliable prediction of certain human disorders as a function of the lineage and/or genetic makeup of an individual or of any two parents or potential parents.Research Personnel: Those individuals engaged in research.Ethics Committees, Research: Hospital or other institutional committees established to protect the welfare of research subjects. Federal regulations (the "Common Rule" (45 CFR 46)) mandate the use of these committees to monitor federally-funded biomedical and behavioral research involving human subjects.Genetics: The branch of science concerned with the means and consequences of transmission and generation of the components of biological inheritance. (Stedman, 26th ed)Informed Consent: Voluntary authorization, by a patient or research subject, with full comprehension of the risks involved, for diagnostic or investigative procedures, and for medical and surgical treatment.Duty to Recontact: The ethical and/or legal obligation of a health provider or researcher to communicate with a former patient or research subject about advances in research relevant to a treatment or to a genetic or other diagnostic test provided earlier, or about proposed new uses of blood or tissue samples taken in the past for another purpose.Research: Critical and exhaustive investigation or experimentation, having for its aim the discovery of new facts and their correct interpretation, the revision of accepted conclusions, theories, or laws in the light of newly discovered facts, or the practical application of such new or revised conclusions, theories, or laws. (Webster, 3d ed)Disclosure: Revealing of information, by oral or written communication.Public Opinion: The attitude of a significant portion of a population toward any given proposition, based upon a measurable amount of factual evidence, and involving some degree of reflection, analysis, and reasoning.Parental Consent: Informed consent given by a parent on behalf of a minor or otherwise incompetent child.Confidentiality: The privacy of information and its protection against unauthorized disclosure.Privacy: The state of being free from intrusion or disturbance in one's private life or affairs. (Random House Unabridged Dictionary, 2d ed, 1993)Attitude: An enduring, learned predisposition to behave in a consistent way toward a given class of objects, or a persistent mental and/or neural state of readiness to react to a certain class of objects, not as they are but as they are conceived to be.Social Discrimination: Group behavior toward others by virtue of their group membership.Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders.Tissue Banks: Centers for acquiring, characterizing, and storing organs or tissue for future use.Genetic Testing: Detection of a MUTATION; GENOTYPE; KARYOTYPE; or specific ALLELES associated with genetic traits, heritable diseases, or predisposition to a disease, or that may lead to the disease in descendants. It includes prenatal genetic testing.Truth Disclosure: Truthful revelation of information, specifically when the information disclosed is likely to be psychologically painful ("bad news") to the recipient (e.g., revelation to a patient or a patient's family of the patient's DIAGNOSIS or PROGNOSIS) or embarrassing to the teller (e.g., revelation of medical errors).Genetic Predisposition to Disease: A latent susceptibility to disease at the genetic level, which may be activated under certain conditions.Researcher-Subject Relations: Interaction between research personnel and research subjects.Molecular Biology: A discipline concerned with studying biological phenomena in terms of the chemical and physical interactions of molecules.United StatesGenome-Wide Association Study: An analysis comparing the allele frequencies of all available (or a whole GENOME representative set of) polymorphic markers in unrelated patients with a specific symptom or disease condition, and those of healthy controls to identify markers associated with a specific disease or condition.Research Support as Topic: Financial support of research activities.Genomics: The systematic study of the complete DNA sequences (GENOME) of organisms.National Institutes of Health (U.S.): An operating division of the US Department of Health and Human Services. It is concerned with the overall planning, promoting, and administering of programs pertaining to health and medical research. Until 1995, it was an agency of the United States PUBLIC HEALTH SERVICE.Consumer Participation: Community or individual involvement in the decision-making process.Patient Selection: Criteria and standards used for the determination of the appropriateness of the inclusion of patients with specific conditions in proposed treatment plans and the criteria used for the inclusion of subjects in various clinical trials and other research protocols.Research Design: A plan for collecting and utilizing data so that desired information can be obtained with sufficient precision or so that an hypothesis can be tested properly.Genetic Variation: Genotypic differences observed among individuals in a population.Phenotype: The outward appearance of the individual. It is the product of interactions between genes, and between the GENOTYPE and the environment.Nursing Research: Research carried out by nurses, generally in clinical settings, in the areas of clinical practice, evaluation, nursing education, nursing administration, and methodology.Genotype: The genetic constitution of the individual, comprising the ALLELES present at each GENETIC LOCUS.Genetic Markers: A phenotypically recognizable genetic trait which can be used to identify a genetic locus, a linkage group, or a recombination event.Genetic Linkage: The co-inheritance of two or more non-allelic GENES due to their being located more or less closely on the same CHROMOSOME.Genetic Techniques: Chromosomal, biochemical, intracellular, and other methods used in the study of genetics.Genetics, Population: The discipline studying genetic composition of populations and effects of factors such as GENETIC SELECTION, population size, MUTATION, migration, and GENETIC DRIFT on the frequencies of various GENOTYPES and PHENOTYPES using a variety of GENETIC TECHNIQUES.Genome, Human: The complete genetic complement contained in the DNA of a set of CHROMOSOMES in a HUMAN. The length of the human genome is about 3 billion base pairs.Questionnaires: Predetermined sets of questions used to collect data - clinical data, social status, occupational group, etc. The term is often applied to a self-completed survey instrument.Attitude to Health: Public attitudes toward health, disease, and the medical care system.Health Services Research: The integration of epidemiologic, sociological, economic, and other analytic sciences in the study of health services. Health services research is usually concerned with relationships between need, demand, supply, use, and outcome of health services. The aim of the research is evaluation, particularly in terms of structure, process, output, and outcome. (From Last, Dictionary of Epidemiology, 2d ed)Sequence Analysis, DNA: A multistage process that includes cloning, physical mapping, subcloning, determination of the DNA SEQUENCE, and information analysis.Translational Medical Research: The application of discoveries generated by laboratory research and preclinical studies to the development of clinical trials and studies in humans. A second area of translational research concerns enhancing the adoption of best practices.Interviews as Topic: Conversations with an individual or individuals held in order to obtain information about their background and other personal biographical data, their attitudes and opinions, etc. It includes school admission or job interviews.Family: A social group consisting of parents or parent substitutes and children.Genetic Association Studies: The analysis of a sequence such as a region of a chromosome, a haplotype, a gene, or an allele for its involvement in controlling the phenotype of a specific trait, metabolic pathway, or disease.Microsatellite Repeats: A variety of simple repeat sequences that are distributed throughout the GENOME. They are characterized by a short repeat unit of 2-8 basepairs that is repeated up to 100 times. They are also known as short tandem repeats (STRs).

*  Genetic Research May Advance Understanding of Ethnic Differences in Breast Cancer
Data may advance knowledge of genetic/genomic basis of breast cancer. ... About the American Association for Cancer ResearchFounded in 1907, the American Association for Cancer Research (AACR) is the ... The research, which began at the University of Miami in Florida and continues at the Translational Genomics Research Institute ... The AACR funds meritorious research directly as well as in cooperation with numerous cancer organizations. As the scientific ...
*  Disease Genetic Research Making Headway - The Pig Site
Vice President Genetic Programs and R&D, Genesus Inc. ... Investment in swine health research and specifically in the ... Early research has pointed to some aspect of genetic control to a pig's response to a disease challenge. The issue has been to ... CANADA - Investment in swine health research and specifically in the genetics of swine diseases has increased substantially in ... Clearly genetic contributions to the pig's ability to mount an immune response to viral challenges has been demonstrated with ...
*  Attitudes toward Genetic Research Review: Results from a National Survey of Professionals involved in Human Subjects Protection
... peer-reviewed health and life sciences research publications. It builds on PubMed Central (PMC), the U.S. National Institutes ... Genetic Research Issues with Majority Agreement. For other genetic research issues, respondents' views were more in agreement ( ... Genetic research is a rapidly changing, quickly growing field of inquiry. Current research uses a wide variety of approaches, ... Genetic research falls under the same regulatory umbrella as other biomedical research where the rights and safety of human ...
*  The next frontier in genetic research: under water
However, such genetic information is not easy to obtain and is currently not being widely used in fishery management.. Breeding ... The CGRFA is the only international body dealing with all genetic resources in agriculture, forestry and fisheries.. Contact:. ... But by paying more attention to aquatic genetic resources and responsibly breeding better fish that grow more efficiently, FAO ... Countries to discuss managing the world's aquatic genetic resources. 11 June, 2007 - In a global first, over 150 governments ...
*  Scientific disciplines come together for genetic research - NewsTimes
... and more complicated genetic engineering may be on the horizon.,br/,,br/,[...] is the use of stem cells to treat a host of ... 01 difference in genetic makeup.,br/,,br/,Doctors are trying to use gene therapy to correct the mutations that cause certain ... are caused by a single mutation to the genetic code.,br/,,br/,The newest frontier is the study of epigenetics - chemical ... has a purely scientific area of research she's concentrating on - she's studying the chemical pathways in the body that lead to ...
*  Advanced Bioinformatics: Genetic Research | NWABR.ORG
Lesson Six: Genetic Research Unit Assessment: Writing Research Reports Genetic_Research_Lesson6_NWABR.pdf In this lesson, ... Genetic_Research_Lesson1_NWABR.pdf In this lesson, students are introduced to the process of genetic research. The lesson ... Lesson Seven: Who Should Pay? Funding Research on Rare Genetic Diseases Genetic_Research_Lesson7_NWABR.pdf In this lesson, ... Advanced Bioinformatics: Genetic Research. This is the second of a two-part series in NWABR's bioinformatics curriculum, funded ...
*  Genetic Research and Aboriginal and Torres Strait Islander Australians | SpringerLink
... genetic research that takes place in Indigenous communities has proven controversial. Indigenous peoples ... While human genetic research promises to deliver a range of health benefits to the population, ... While human genetic research promises to deliver a range of health benefits to the population, genetic research that takes ... Genetic research Ethical issues Indigenous Aboriginal Torres Strait Islander Research governance An erratum to this article is ...
*  Incidental Findings in Genetic Research and Genetic Testing
... outside the scope of the original research objective or diagnostic test being performed ... Incidental findings arise when clinically relevant genetic information about a research participant or patient is identified ... Incidental Findings in Genetic Research and Genetic Testing. Leigh Jackson, Plymouth University, Plymouth, UK ... Jackson, Leigh(Feb 2014) Incidental Findings in Genetic Research and Genetic Testing. In: eLS. John Wiley & Sons Ltd, ...
*  Genetic Research Archives - Better Health - Better Health
... research, health policy, healthcare reform, true stories, disease management and expert interviews. ... I was happy when Pathway Genomics, one of the newest direct-to-consumer genetic companies, offered me a free genetic test. ... As family history is the best genetic test out there, so it's important to use that data while analyzing genetic results. ... March 25th, 2010 by Berci in Better Health Network, Opinion, Research. No Comments » ...
*  Genetic research: who is at risk for alcoholism? - Free Online Library
Genetic research: who is at risk for alcoholism?(Report) by 'Alcohol Research & Health'; Health, general Adoption Alcoholism ... Genetic aspects Risk factors Anopheles DNA Enzymes Enzymology Genomics Quantitative genetics ... APA style: Genetic research: who is at risk for alcoholism?. (n.d.) >The Free Library. (2014). Retrieved Dec 10 2017 from https ... Genetic research: who is at risk for alcoholism?." Retrieved Dec 10 2017 from ...
*  BioNews - Olympic anti-doping lab will become medical and genetic research centre
Olympic anti-doping lab will become medical and genetic research centre. 13 August 2012 ... Mr Cameron announced the opening of the MRC-NIHR Phenome Research Centre at the Global Health Policy Summit in London. The ... Funding for the centre for its first five years has been secured by £5 million investments from both the Medical Research ... The Prime Minister, David Cameron, has announced a new partnership between Genomics England and Cancer Research UK as part of a ...
*  Health experts from Manchester and PKU join forces on genetic research Peking University
Health experts from Manchester and PKU join forces on genetic research. Leaders from The University of Manchester and Central ... Our Trust is one of the leading genetic research centres in Europe, and we work closely with The University of Manchester. This ... Home» News» News» Media» Health experts from Manchester and PKU join forces on genetic research ... They also met Arthritis Research UK's Genetics Group and the Manchester Biomedical Research Centre team as well as Manchester ...
*  Genetic research into dyslexia - Wikipedia
The genetic research into dyslexia has its roots in the work of Galaburda and Kemper, 1979, and Galaburda et al. 1985, from the ... High genetic concordance found in twin studies suggest a significant genetic influence on reading ability, although the degree ... Indeed, there also appear to be a large genetic influence on other learning abilities, such as language skills. The Generalist ... Linkage analysis and genetic association studies (typically quantitative trait locus association studies, which use microarrays ...
*  Opinions of Children about Participation in Medical Genetic Research - Abstract - Public Health Genomics 2011, Vol. 14, No. 4-5...
i,Aims:,/i, The objective was to evaluate children's opinions about their participation in a large research project. ,i,Methods ... Opinions of Children about Participation in Medical Genetic Research. van der Pal S.a · Sozanska B.b · Madden D.c · Kosmeda A.b ... Burke W, Diekema DS: Ethical issues arising from the participation of children in genetic research. J Pediatr 2006;149(suppl 1 ... and children's attitudes toward the enrollment of minors in genetic susceptibility research: implications for informed consent ...
*  Genetic News, Research
Although this genetic abnormality is found in one out of 700 births, only 20% of foetuses with trisomy 21 reach full term. ... Research reveals cost-effectiveness of whole-population screening for breast, ovarian cancer gene mutations Screening the ... Hutchinson-Gilford progeria syndrome (HGPS) is an extremely rare fatal genetic disorder which causes sufferers to age ... Down's syndrome - also known as trisomy 21 - is a genetic disorder caused by an additional third chromosome 21. ...
*  Genetic Research and Type 2 Diabetes Mellitus
It is important to realize that a personalized life-style managements and genetic therapies should be applied to T2DM patients ... This disease is caused by both environmental and genetic factors. Current treatments aim at relieving the symptoms and slowing ... In the future, with further research, these targets are believed to contribute to the earlier diagnosis and improved disease ...
*  Genetic Information Research Institute - Wikipedia
The Genetic Information Research Institute (GIRI) is a non-profit institution that was founded in 1994 by Jerzy Jurka. The ... mission of the institute "is to understand biological processes which alter the genetic makeup of different organisms, as a ...
*  9 Top genetic research paper topics
We have compiled an extensive list of genetic research paper topics for you to choose from. ... Genetic issues are of great importance to human life. ... Genetic technologies. This topic will require you to research ... Recommended genetic research paper topics. *Genetics and Obesity. Research on the relationship between obesity and genes with ... Stem Cell Research. Under this topic, you will have to research on advances in the field of stem cell research and its ...
*  BibMe: Free Mutation Research - Genetic Toxicology and Environmental Mutagenesis Bibliography & Citation Maker
If required by your instructor, you can add annotations to your citations. Just select Add Annotation while finalizing your citation. You can always edit a citation as well. ...
*  New Research Establishes Genetic Associations In Hepatitis C
Genetic Research institute of the Desert (GRID), a nonprofit research center was established in the Coachella valley with a ... This research effort focused on the genetic variants in the HCV group of patients compared to normal healthy individuals. ... Genetic association could determine the drug responsiveness and aid in treatment; accordingly, a research objective was to ... The authors of "Multiple Gene Associations In Hepatitis 'C' Infection, " are Radhika Gade-Andavolu, PhD from Genetic Research ...
*  New Genetic-Clock Research Challenges Millions of Years | The Institute for Creation Research
New Genetic-Clock Research Challenges Millions of Years by Nathaniel T. Jeanson, Ph.D. * Evidence for Creation ... New Genetic-Clock Research Challenges Millions of Years. Acts & Facts. 43 (4). ... Figures adapted with permission from Answers Research Journal. * Dr. Jeanson is Deputy Director for Life Sciences Research at ... calculating the mutation rate from the genetic differences divided by 6,000 years, and then claiming that modern genetic ...
*  Research Associate - psychosocial / health service research - Genetic Alliance UK -
Research Associate - psychosocial / health service research. Genetic Alliance UK Sorry, but the advert you were looking for has ... To see more employment opportunities with Genetic Alliance UK, please click here. ...
*  Lee CS[Author] - PubMed - NCBI
Genetic Testing Registry. *Influenza Virus. *Map Viewer. *Online Mendelian Inheritance in Man (OMIM) ... Research at NCBI. *NCBI News & Blog. *NCBI FTP Site. *NCBI on Facebook ...
*  KC research finds fish oil may reduce very premature birth | Beach Center
... gender expression and genetic information in the University's programs and activities. The following person has been designated ... KC research finds fish oil may reduce very premature birth KC research finds fish oil may reduce very premature birth. ... Research of Kansas City area pregnant women finds a possible way to lower the chances of a very premature birth. Dr. Susan ... Research in some other countries has had similar results. Now Dr. Carlson hopes our government will fund a big study. She says ...
*  Lafayette College biomechanics
Stem cell research offers new hope in the areas of cancer treatment as well as life extension. The regulation of genetic ... Genetics Research Job Listings. As the economy improves, many engineering consulting firms are beginning to hire additional ... Depending on the tools and applications, it often overlaps with the related fields of biomedicine, pharmacology, and genetic ... In particular, the biotechnology field is rich in jobs such as nanotechnology, biomedical engineering, and petroleum research. ...

Return of results: Return of results is a concept in research ethics which describes the extent of the duty of a researcher to reveal and explain the results of research to a research participant.UK Biobank: UK Biobank is a large long-term biobank study in the United Kingdom (UK) which is investigating the respective contributions of genetic predisposition and environmental exposure (including nutrition, lifestyle, medications etc.) to the development of disease.Research participant: A research participant, also called a human subject or an experiment, trial, or study participant or subject, is a person who participates in human subject research by being the target of observation by researchers.David Rimoin: David Lawrence Rimoin (November 9, 1936 – May 27, 2012) was a Canadian American geneticist. He was especially noted for his research into the genetics of skeletal dysplasia (dwarfism), inheritable diseases such as Tay–Sachs disease, and diabetes.Walter Reed Army Institute of ResearchAndrew Dickson WhitePublic opinion on nuclear issues: Public opinion on nuclear issues is the aggregate of attitudes or beliefs held by the adult population concerning nuclear power, nuclear weapons and uranium mining.Legal status of tattooing in the United States: In the United States, there is no federal law regulating the practice of tattooing. However, all 50 states and the District of Columbia have statutory laws requiring a person receiving a tattoo be 18 years of age or older.Medix UK Limited: Medix UK Limited is a UK-based market research consultancy providing online research in healthcare.Privacy Center: Privacy Center is a form of ransomware that hijacks a Microsoft Windows operating system and insists that the upgrades their protection for a price. It is a green system tray icon that often takes over the screen and blocks the desktop, including the start icon.Hukou systemCross-cultural psychiatry: Cross-cultural psychiatry, transcultural psychiatry, or cultural psychiatry is a branch of psychiatry concerned with the cultural context of mental disorders and the challenges of addressing ethnic diversity in psychiatric services. It emerged as a coherent field from several strands of work, including surveys of the prevalence and form of disorders in different cultures or countries; the study of migrant populations and ethnic diversity within countries; and analysis of psychiatry itself as a cultural product.Certified Tissue Bank Specialist: A Certified Tissue Bank Specialist (CTBS) designation is a professional certification mark for Tissue Banking Professionals conferred by the American Association of Tissue Banks (AATB). AATB oversees musculoskeletal, cardiovascular, skin and reproductive tissue banks in the United States.Dda (DNA-dependent ATPase): Dda (short for DNA-dependent ATPase; also known as Dda helicase and Dda DNA helicase) is the 439-amino acid 49,897-atomic mass unit protein coded by the Dda gene of the bacteriophage T4 phage, a virus that infects enterobacteria.List of Parliamentary constituencies in Kent: The ceremonial county of Kent,Population stratification: Population stratification is the presence of a systematic difference in allele frequencies between subpopulations in a population possibly due to different ancestry, especially in the context of association studies. Population stratification is also referred to as population structure, in this context.Ontario Genomics Institute: The Ontario Genomics Institute (OGI) is a not-for-profit organization that manages cutting-edge genomics research projects and platforms.The Ontario Genomics Institute OGI also helps scientists find paths to the marketplace for their discoveries and the products to which they lead, and it works through diverse outreach and educational activities to raise awareness and facilitate informed public dialogue about genomics and its social impacts.Genetic variation: right|thumbPhenotype microarray: The phenotype microarray approach is a technology for high-throughput phenotyping of cells.Genetic linkage: Genetic linkage is the tendency of alleles that are located close together on a chromosome to be inherited together during the meiosis phase of sexual reproduction. Genes whose loci are nearer to each other are less likely to be separated onto different chromatids during chromosomal crossover, and are therefore said to be genetically linked.Panmixia: Panmixia (or panmixis) means random mating.King C and Stanfield W.Closed-ended question: A closed-ended question is a question format that limits respondents with a list of answer choices from which they must choose to answer the question.Dillman D.DNA sequencer: A DNA sequencer is a scientific instrument used to automate the DNA sequencing process. Given a sample of DNA, a DNA sequencer is used to determine the order of the four bases: G (guanine), C (cytosine), A (adenine) and T (thymine).Science Translational Medicine: Science Translational Medicine is an interdisciplinary medical journal established in October 2009 by the American Association for the Advancement of Science.Psychiatric interview: The psychiatric interview refers to the set of tools that a mental health worker (most times a psychiatrist or a psychologist but at times social workers or nurses) uses to complete a psychiatric assessment.Microsatellite: A microsatellite is a tract of repetitive DNA in which certain DNA motifs (ranging in length from 2–5 base pairs) are repeated, typically 5-50 times. Microsatellites occur at thousands of locations in the human genome and they are notable for their high mutation rate and high diversity in the population.

(1/247) Indigenous peoples and the morality of the Human Genome Diversity Project.

In addition to the aim of mapping and sequencing one human's genome, the Human Genome Project also intends to characterise the genetic diversity of the world's peoples. The Human Genome Diversity Project raises political, economic and ethical issues. These intersect clearly when the genomes under study are those of indigenous peoples who are already subject to serious economic, legal and/or social disadvantage and discrimination. The fact that some individuals associated with the project have made dismissive comments about indigenous peoples has confused rather than illuminated the deeper issues involved, as well as causing much antagonism among indigenous peoples. There are more serious ethical issues raised by the project for all geneticists, including those who are sympathetic to the problems of indigenous peoples. With particular attention to the history and attitudes of Australian indigenous peoples, we argue that the Human Genome Diversity Project can only proceed if those who further its objectives simultaneously: respect the cultural beliefs of indigenous peoples; publicly support the efforts of indigenous peoples to achieve respect and equality; express respect by a rigorous understanding of the meaning of equitable negotiation of consent, and ensure that both immediate and long term economic benefits from the research flow back to the groups taking part.  (+info)

(2/247) Genetic medicine: an experiment in community-expert interaction.

This project tested a two-way model of communication between lay groups and experts about genetic medicine in Perth, Western Australia. Focus group discussion with community group participants was followed by a communication workshop between community group participants and experts. Four groups of concerns or themes emerged from discussion: clinical considerations; legislative concerns; research priorities, and ethical and wider considerations. Community group concerns are not always met by the actions of "experts". This is, in part, because of the differing life-worlds of each group. However, the communication workshop showed the potential of two-way communication for both lay and expert members in understanding the others' viewpoint. Further, the approach developed here offers one possible way for community groups to participate in a substantial way in policy formulation processes.  (+info)

(3/247) Public deliberation and private choice in genetics and reproduction.

The development of human genetics raises a wide range of important ethical questions for us all. The interpersonal dimension of genetic information in particular means that genetics also poses important challenges to the idea of patient-centredness and autonomy in medicine. How ought practical ethical decisions about the new genetics be made given that we appear, moreover, no longer to be able to appeal to unquestioned traditions and widely shared communitarian values? This paper argues that any coherent ethical approach to these questions must be able both to uphold the moral status of the individual and at the same time recognise the communitarian, interpersonal dimensions both of the world in which we live and of personal autonomy itself. The paper then goes on to propose an approach to the resolution of the ethical questions raised by the use of the new genetics in reproductive choice through the development of a coherent and principled process of public reason and justification oriented towards the support and development of personal autonomy.  (+info)

(4/247) The case for a new system for oversight of research on human subjects.

The increasing emphasis on evidence-based clinical practice has thrown into sharp focus multiple deficiencies in current systems of ethical review. This paper argues that a complete overhaul of systems for ethical oversight of studies involving human subjects is now required as developments in medical, epidemiological and genetic research have outstripped existing structures for ethical supervision. It shows that many problems are now evident and concludes that sequential and piecemeal amendments to present arrangements are inadequate to address these. At their core present systems of ethical review still rely on the integrity and judgment of individual investigators. One possible alternative is to train and license research investigators, make explicit their responsibilities and have ethics committees devote much more of their time to monitoring research activity in order to detect those infringing the rules.  (+info)

(5/247) A seat at the table: membership in federal advisory committees evaluating public policy in genetics.

OBJECTIVES: This study examined who participates in federal government advisory committees regarding public policy in human and medical genetics, what parties they represent, and to what extent the general public is meaningfully represented. METHODS: Analysis focused on 7 federal government documents published from January 1990 to February 1995. Advisors were categorized into 4 groups based on the professional affiliations that were listed in the publications. After a search of several references and data-bases, the study examined whether these individuals also had other affiliations not listed in the government publications. RESULTS: Individuals whose principal affiliations were with academia (n = 32; 44%) or industry (n = 19; 26%) represented nearly three fourths of the sample, followed by government employees (n = 13; 18%) and consumer advocates (n = 8; 11%). At least 16% of the advisors serving on the federal committees, mostly members of academia, had a dual affiliation. CONCLUSIONS: These data indicate that the public has modest representation on key federal advisory committees making policy recommendations regarding human genetics technology and clinical practice and that there is ample room for additional public participation.  (+info)

(6/247) Ethical approval for research involving geographically dispersed subjects: unsuitability of the UK MREC/LREC system and relevance to uncommon genetic disorders.

OBJECTIVES: To assess the process involved in obtaining ethical approval for a single-centre study involving geographically dispersed subjects with an uncommon genetic disorder. DESIGN: Observational data of the application process to 53 local research ethics committees (LRECs) throughout Wales, England and Scotland. The Multicentre Research Ethics Committee (MREC) for Wales had already granted approval. RESULTS: Application to the 53 LRECs required 24,552 sheets of paper and took two months of the researcher's time. The median time taken for approval was 39 days with only seven (13%) of committees responding within the recommended 21 days. In at least nineteen cases (36%) a subcommittee considered the application. Thirty-three committees (62%) accepted the proposal without amendments but, of the remainder, four (8%) requested changes outside of the remit of LRECs. DISCUSSION: Difficulties still exist with the system for obtaining ethical approval for studies involving a single centre but with patients at multiple sites, as is often required for genetic observational research. As such studies differ from true multicentre studies, it may be advantageous to develop a separate and specific process of application to ensure that resources are not unnecessarily expended in the quest for ethical approval.  (+info)

(7/247) Attitudes of the Japanese public and doctors towards use of archived information and samples without informed consent: preliminary findings based on focus group interviews.

BACKGROUND: The purpose of this study is to explore laypersons' attitudes toward the use of archived (existing) materials such as medical records and biological samples and to compare them with the attitudes of physicians who are involved in medical research. METHODS: Three focus group interviews were conducted, in which seven Japanese male members of the general public, seven female members of the general public and seven physicians participated. RESULTS: It was revealed that the lay public expressed diverse attitudes towards the use of archived information and samples without informed consent. Protecting a subject's privacy, maintaining confidentiality, and communicating the outcomes of studies to research subjects were regarded as essential preconditions if researchers were to have access to archived information and samples used for research without the specific informed consent of the subjects who provided the material. Although participating physicians thought that some kind of prior permission from subjects was desirable, they pointed out the difficulties involved in obtaining individual informed consent in each case. CONCLUSIONS: The present preliminary study indicates that the lay public and medical professionals may have different attitudes towards the use of archived information and samples without specific informed consent. This hypothesis, however, is derived from our focus groups interviews, and requires validation through research using a larger sample.  (+info)

(8/247) Protecting subjects' interests in genetics research.

Biomedical researchers often assume that sponsors, subjects, families, and disease-associated advocacy groups contribute to research solely because of altruism. This view fails to capture the diverse interests of many participants in the emerging research enterprise. In the past two decades, patient groups have become increasingly active in the promotion and facilitation of genetics research. Simultaneously, a significant shift of academic biomedical science toward commercialization has occurred, spurred by U.S. federal policy changes. The concurrent rise in both the roles that subjects play and the commercial interests they have presents numerous ethical challenges. We examine the interests of different research participants, finding that these interests are not addressed by current policies and practices. We conclude that all participants should be given a voice in decisions affecting ownership, access to, and use of commercialized products and services, and that researchers and institutions should negotiate issues relating to control of research results and the sharing of benefits before the research is performed.  (+info)

  • significant genetic
  • 2014) validated that the phenotype resulting from a PRRS ELISA test, known as the sample to positive ratio (S/P), was under significant genetic control. (
  • High genetic concordance found in twin studies suggest a significant genetic influence on reading ability, although the degree depends on the definition of dyslexia. (
  • In this view, analysis of Ashkenazi Jews together with a large sample from the region of the Khazar Khaganate would corroborate earlier results that Ashkenazi Jews derive their ancestry primarily from populations of the Middle East and Europe, that they possess considerable shared ancestry with other Jewish populations, and that there is no indication of a significant genetic contribution either from within or from north of the Caucasus region. (
  • 2001
  • d'Agincourt‐Canning L (2001) Experiences of genetic risk: disclosure and the gendering of responsibility. (
  • biological
  • This three-year award provided funding for education outreach programs and curriculum development that help secondary school teachers and their students learn about how information technology is used in biological research. (
  • The mission of the institute "is to understand biological processes which alter the genetic makeup of different organisms, as a basis for potential gene therapy and genome engineering techniques. (
  • Specimens may be subject to biological patenting or research results from specimen experimentation may lead to the development of products which some entity will own. (
  • In the following years, chemists developed techniques for sequencing both nucleic acids and proteins, while others worked out the relationship between the two forms of biological molecules: the genetic code. (
  • populations
  • In the wild, fish genetic resources help determine the productivity of fish populations and their adaptability to environmental stresses such as climate change and human development. (
  • These studies demonstrated that antibody response during a PRRS outbreak can be predicted using genetic markers on chromosome 7 and that results are consistent across different Landrace-Yorkshire populations. (
  • In particular, they investigate whether there is a common genetic heritage among various Jewish populations. (
  • For populations of the Jewish diaspora, the genetic composition of Ashkenazi, Sephardi, and Mizrahi Jewish populations show significant amounts of shared Middle Eastern ancestry. (
  • A study conducted in 2013 found no evidence of a Khazar origin for Ashkenazi Jews and suggested that "Ashkenazi Jews share the greatest genetic ancestry with other Jewish populations, and among non-Jewish populations, with groups from Europe and the Middle East. (
  • In general, various DNA studies have found that the gene frequencies of North African populations are intermediate between those of the Near East, the Horn of Africa, southern Europe and Sub Saharan Africa, though Egypt's NRY frequency distributions appear to be much more similar to those of the Middle East than to any sub-Saharan African population, suggesting a much larger Eurasian genetic component. (
  • It furthermore showed that overall, the complete mtDNA sequence analysis revealed an extremely high level of genetic diversity in the Iranian populations studied which is comparable to the other groups from the South Caucasus, Anatolia and Europe. (
  • The same 2013 research further noted that "the results of AMOVA and MDS analyses did not associate any regional and/or linguistic group of populations in the Anatolia, Caucasus and Iran region pointing to strong genetic affinity of Indo-European speaking Persians and Turkic-speaking Qashqais, thus suggesting their origin from a common maternal ancestral gene pool. (
  • genes
  • Those involved in the Human Genome Project worked from 1990 to 2003 to identify the 22,000 genes in human beings and to determine the sequences of the 3 billion chemical pairs that make up human DNA - the molecules that encode genetic information. (
  • The unit concludes with an authentic student research project, sequencing the COI genes from samples obtained through a partnership with the Seattle Aquarium in Seattle, Washington, or samples they collect themselves in the community. (
  • The unit concludes with an optional authentic student research project, sequencing the COI genes from samples they collect themselves or samples obtained through partnerships with the National Oceanographic and Atmospheric Association (NOAA) and the Seattle Aquarium, both based in Seattle. (
  • Linkage analysis and genetic association studies (typically quantitative trait locus association studies, which use microarrays to look at single nucleotide polymorphisms of multiple genes at once) have been used to identify candidate genes that may be implicated in dyslexia. (
  • accordingly, a research objective was to determine genetic variants associated with the disease and to find the multiple allelic associations of these genes. (
  • This research will continue with the addition of more genes and the target set numbers of genes are to be pooled to ascertain the risk. (
  • The heritability of scoliosis has long been suspected, and many research projects have been conducted in search of the genes responsible for the disease. (
  • world's
  • A lack of coherent management of the world's fish genetic resources is becoming a serious problem, the agency warned. (
  • About the American Association for Cancer Research Founded in 1907, the American Association for Cancer Research (AACR) is the world's first and largest professional organization dedicated to advancing cancer research and its mission to prevent and cure cancer. (
  • diversity
  • But information about aquatic genetic resources is spotty, the application of genetics in capture fisheries and aquaculture has so far been limited, and adequate mechanisms for conserving the genetic diversity of farmed fish and their wild relatives are poorly developed, according to FAO. (
  • We know that aquatic environments are changing due to climate change, movement of alien species, human development and other factors, and that species will need to adapt to survive -- genetic diversity will help with the adaptation. (
  • In many cases, impacts on native aquatic diversity from fish that have accidentally escaped from farms, or from fish that are intentionally stocked into the wild, can not be determined because information on the genetic resources of both wild and farmed fish is simply not known. (
  • As long as the mitochondrial mutation rate has been accurately measured in the laboratory, equation (1) can be used to predict genetic diversity. (
  • In contrast, the evolutionary timescale (and, by extension, the old-earth creation timescale) predicts levels of genetic diversity that are 12-29 times off the real DNA differences that we see today (124-290 mitochondrial DNA differences versus 10). (
  • influences
  • The increasing availability of genomic tools allows for a much more detailed analysis of genetic influences on a pigs response to a disease challenge. (
  • Family studies, which evaluate the members of a family (both alcoholic and nonalcoholic members) for the presence of the disease, also have provided convincing evidence that the risk for alcohol dependence is determined partly by genetic influences (Gelernter and Kranzler 2009). (
  • findings
  • There is a lack of primary research data concerning patient and participant preferences regarding the management of incidental findings in research and the clinic. (
  • This overview summarizes the evidence supporting a role for genetic factors in alcoholism and describes how new genetic findings could affect our understanding of the causes and factors contributing to this debilitating disease and could potentially guide the development of improved treatments. (
  • The research was led by Carsten Pusch of the University of Tübingen in Germany and Rabab Khairat, who released their findings in the Journal of Applied Genetics. (
  • Centre
  • JB is supported by an NHMRC Project Grant (#634301), a National Institutes of Health RO1 grant (AI076233-01), and the NIH Tropical Medicine Research Centre (#1P50AI074321-01). (
  • Announcing the new facility, the Prime Minister, David Cameron, said the centre would 'take advantage of the extraordinary opportunities that lie in combining genetic data with the results of medical tests on tissues and blood. (
  • Funding for the centre for its first five years has been secured by £5 million investments from both the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). (
  • Mr Cameron announced the opening of the MRC-NIHR Phenome Research Centre at the Global Health Policy Summit in London. (
  • The University of Glasgow will receive £20 million to develop a research centre dedicated to personalised medicine. (
  • genomes
  • If risk for a disease (e.g., alcohol dependence) is determined at least in part by genetic factors, monozygotic twins, who have identical genetic material (i.e., genomes), would be expected to have a higher concordance rate for alcohol dependence than dizygotic twins, who on average share only half their genome. (
  • The Prime Minister, David Cameron, has announced a new partnership between Genomics England and Cancer Research UK as part of a Government bid to make the UK the first country in the world to sequence 100,000 genomes within five years. (
  • treatments
  • The planned Tumuor Profiling Unit at The Institute for Cancer Research, London will focus on sequencing the DNA of cancer tumours to help diagnose and monitor different types of cancer, and to also identify those more likely to respond to particular treatments. (
  • It is important to realize that a personalized life-style managements and genetic therapies should be applied to T2DM patients simultaneously and the future T2DM treatments are believed to be no longer a single option, but will tackle several aspects of this disease at the same time. (
  • mutation
  • Screening the entire population for breast and ovarian cancer gene mutations, as opposed to just those at high-risk of carrying this mutation, is cost effective and could prevent more ovarian and breast cancers than the current clinical approach, according to research published today in the Journal of the National Cancer Institute. (
  • magnitude
  • Several study designs, including twin, family, and adoption studies, are used to determine whether relatively common diseases, such as alcohol dependence, are caused at least in part by genetic factors and to estimate the magnitude of the overall genetic contribution. (
  • laboratory
  • Research on Aboriginal genetics carried out in the Blackwell laboratory is funded by the NHMRC and approved by WAAHIEC. (
  • You will join a well-equipped and well-funded laboratory, whose research bridges the fields of experiment and theory in molecular and structural biology. (
  • minors
  • Borry P, Stultiens L, Nys H, Cassiman JJ and Dierickx K (2006) Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. (
  • Minors' consent to health care treatment and research. (
  • disorders
  • Given their extensive documentation of lineages connecting many thousands of living individuals to a single common ancestor, their relatively larger extended family size (attributable in part to the early Mormon practice of plural marriage), relatively larger immediate family size, religious emphasis on "clean" or healthy living, and relative longevity, the genealogical data maintained by many Mormon ancestral family organizations have also been instrumental in medical research of genetic disorders. (
  • diseases
  • Frederick said, however, that other diseases, like cancer and diabetes, seem to be far more complicated, involving both genetic coding and environmental factors that have yet to be sorted out. (
  • CANADA - Investment in swine health research and specifically in the genetics of swine diseases has increased substantially in the last several years, writes Bob Kemp, PhD PAg, Vice President Genetic Programs and R&D, Genesus Inc. (
  • In the past 20 years, the number of laboratories carrying out genetic testing has risen from 110 to 605, whereas the number of diseases for which testing is available has risen from 111 to 2929. (
  • Genetic Research institute of the Desert (GRID), a nonprofit research center was established in the Coachella valley with a goal to investigate genetic aspects of cancer, as well as infectious and some neurological diseases. (
  • Patients seeking treatment at Infectious Diseases and Gastroenterology clinics at the Eisenhower Medical center participated in this research. (
  • participants
  • Current research uses a wide variety of approaches, ranging from family linkage analyses to genome-wide association studies that require tens of thousands of participants, and from medical sequencing studies to gene expression studies. (
  • If genetic testing is done, then researches may get health information about participants, but in many cases there is no plan in place for giving participants information derived from their samples. (
  • data
  • In 1971 the Internal Revenue Service of the United States issued a Revenue Ruling determining that non-profit family organizations that are expressly "formed to compile genealogical research data on its family members in order to perform religious ordinances in accordance with the precepts of the religious denomination to which family members belong" are exempt under Section 501(c)(3). (
  • In the United States, for example, the Office for Human Research Protections often promotes a traditional system wherein data which could identify a participant is coded, and then elsewhere stored away from the data is key which could decipher the identities in special circumstances when required outside of usual research. (
  • Another problem is that even small amounts of genetic data, such as a record of 100 single nucleotide polymorphisms, can uniquely identify anyone. (
  • There have been problems deciding what safeguards should be in place for storing medical research data. (
  • studies
  • Early genetic studies were focused on delineating whether environmental factors, genetic factors, or both contributed to the risk for alcohol dependence. (
  • 2005) showed based on genetic studies and morphology, that the recently rediscovered and critically endangered Philippine forest turtles, until that time known as Heosemys leytensis, were actually very closely related. (
  • participation
  • Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental causes of asthma). (
  • Whereas the development of early participant protection regimes was rooted in a concern to protect human subjects from the harms that could occur as a result of research participation, the relatively recent rise of research advocacy groups has often pressed for greater inclusion and less paternalistic oversight. (
  • legacy
  • In August 2012, Dr. Harry Ostrer in his book Legacy: A Genetic History of the Jewish People, summarized his and other work in genetics of the last 20 years, and concluded that all major Jewish groups share a common Middle Eastern origin. (
  • study
  • This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic research. (
  • In 2013, Nature announced the publication of the first genetic study utilizing next-generation sequencing to ascertain the ancestral lineage of an Ancient Egyptian individual. (
  • medical
  • EK is supported by an Australian National Health and Medical Research Council Training Fellowship for Aboriginal and Torres Strait Islander Health Research (#454813). (
  • The Wellcome Trust and Medical Research Council have announced a £12.75 million investment to create a database of induced pluripotent stem) cells. (
  • species
  • While these reports provide general indicators for the state of biodiversity for major commercial fish stocks (see sidebar, right), they likely underestimate of the number of species being caught, and detailed information at the genetic level is still lacking. (
  • After a short background explanation provided by the teacher about how genetic research is done, students make their own hypotheses and predictions about the relatedness of canine species, and align paper DNA sequences to evaluate their hypotheses. (
  • decades
  • Growth continued in the following decades as the university developed into a research center for fields such as computer science and medicine. (
  • causes
  • Indigenous peoples have raised concerns, including a lack of benefit to their communities, a diversion of attention and resources from non-genetic causes of health disparities and racism in health care, a reinforcement of "victim-blaming" approaches to health inequalities, and possible misuse of blood and tissue samples. (
  • Hutchinson-Gilford progeria syndrome (HGPS) is an extremely rare fatal genetic disorder which causes sufferers to age prematurely. (
  • suggest
  • These estimates suggest that although genetic factors are important, nongenetic factors also contribute significantly to the risk for alcohol dependence. (
  • individual
  • The potential to improve the disease response of individual pigs by genetic selection is getting closer to reality. (
  • As the scientific partner of Stand Up To Cancer, the AACR provides expert peer review, grants administration and scientific oversight of team science and individual grants in cancer research that have the potential for near-term patient benefit. (
  • Genetic testing allows physicians to identify individual patients' risk of curve progression with a surrogate outcome, meaning risk of progression can be known without patients being subjected to frequent office visits and exposure to radiation from multiple radiographs. (
  • University
  • The university is home to the Genetic Science Learning Center, a resource which educates the public about genetics through its website. (
  • The University of Utah (also referred to as the U, U of U, or Utah) is a public coeducational space-grant research university in Salt Lake City, Utah, United States. (
  • The university is classified in the highest ranking: "R-1: Doctoral Universities - Highest Research Activity" by the Carnegie Classification of Institutions of Higher Education. (
  • The university ranks among the top 50 U.S. universities by total research expenditures with over $518 million spent in 2015. (
  • welfare
  • Major themes surrounding this issue include patient autonomy, patient welfare, harmful secrets and genetic literacy. (
  • The purposes of such family organizations may include coordinating family efforts in promoting welfare, education, conducting family history research, holding reunions, compiling family newsletters and publications, and other family-related LDS practices. (
  • determine
  • The issue has been to refine the understanding of genetic control and then to determine how best to implement selection. (
  • AIS genetic testing is the process of analyzing the DNA of a patient who has been diagnosed with Adolescent Idiopathic Scoliosis to determine his or her likelihood of progression to a severe spinal curve. (
  • human
  • 2003. Essentially yours: The protection of human genetic information in Australia-section 36: Kinship and identity . (
  • However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. (
  • The majority of respondents felt that different guidance is needed for various aspects of genetic protocol review compared with other types of human subjects research. (
  • At the same time, the evolution of the research enterprise into a system that favors "Big Science" - large projects, often involving multiple complex scientific aims and inter-institutional collaboration - presents new challenges to a human subjects protection system designed to maintain accountability at the local level. (
  • large
  • The paper argues that a successful transition to more responsible, sustainable and productive aquaculture and capture fisheries will depend in large measure upon effective management of fish genetic resources. (
  • However, the large and increasing contributions from aquaculture to world fish supply and the problems of effectively managing capture fisheries stocks that are not well characterized genetically have not yet been recognized in terms of increased investment in fish genetic resources management policies," cautions FAO. (
  • Indeed, there also appear to be a large genetic influence on other learning abilities, such as language skills. (