PENTA 2009 guidelines for the use of antiretroviral therapy in paediatric HIV-1 infection. Newborn screening. The clinical context of that report focused on decisions about testing for single-gene disorders in response to either a family history or within-population screening programs. Arguing in favor of such an approach, Palmor and Fiester conclude that health-care professionals have no legitimate right to decide about a matter with such high potential for harm to so many individuals in both the close and extended family. The ASHG also recommends developing novel models for molecular laboratory and interpretive services on the basis of prospects for the re-analysis of genetic information over time. Identifying consanguinity through routine genomic analysis: reporting requirements. However, health departments do not typically collect data on the longer-term outcomes for children or their families. Encouraging families to consider such decisions over a period of time might convince some families that testing will be helpful in their particular context, or it might become clear that it will be most appropriate to defer testing until adulthood. Secretary’s Advisory Committee on Genetics, Health, and Society (2010). Communication about carrier testing within hemophilia A families. By:Ms. Shalini joshi m.sc.nsg ist year s.c.o.n.
Information relevant to reproductive risk is also provided by the generation of results related to carrier status. Practitioners have a duty to report suspected child abuse.
The inevitable and significant increase in the number and use of genetic tests will require more genetic counselors and more genetically competent nurses, physician assistants, and physicians.
Given the intuition that there could be extensive harm, health-care providers following a plan of non-disclosure could be exercising prudence in avoiding interference in the family relationships.
If you wish to opt out, please close your SlideShare account.
Cancer pharmacogenomics in children: research initiatives and progress to date. Such infrastructures would support the ability to assess outcomes and to conduct controlled trials of therapeutic options and evaluate support systems required for affected children and their families. Genomics really gets personal: how exome and whole genome sequencing challenge the ethical framework of human genetics research. These studies, performed over 20 years, have shown high uptake rates and have not demonstrated adverse psychological consequences.
The report recommended deferral of testing in the face of this uncertainty, yet it also recommended deference to parents in some circumstances. Inspections, Compliance, Enforcement, and Criminal Investigations of the U.S. Food and Drug Administration. dehradun. Evaluation plans should be in place before program development begins and should reflect carefully developed educational objectives and outcomes. If you continue browsing the site, you agree to the use of cookies on this website. At the present time, genome-scale sequencing is not indicated for screening in healthy children. Even these few examples demonstrate the complexity of the challenges facing the education of health professionals and the subsequent integration of genetics and genomics into practice. Each new genetic test that is developed raises serious issues for medicine, public health, and social policy regarding the circumstances under which the test should be used, how the test is implemented, and what uses are made of its results.
November 22, 2014. http://www.fda.gov/iceci/enforcementactions/warningletters/2013/ucm376296.htm. Unlike medical tests that measure temporary aspects of an individual’s anatomy or physiology, genetic tests provide information of a permanent nature about an individual and potentially their family members.