scholarly journals Human Genetics Society of Australasia Position Statement: Predictive and Presymptomatic Genetic Testing in Adults and Children

2020 ◽  
Vol 23 (3) ◽  
pp. 184-189
Author(s):  
Danya F. Vears ◽  
Samantha Ayres ◽  
Jackie Boyle ◽  
Julia Mansour ◽  
Ainsley J. Newson
Keyword(s):  
Genetic Counseling ◽  
Genetic Testing ◽  
Young People ◽  
Human Genetics ◽  
Predictive Testing ◽  
Position Statement ◽  
Informed Decision ◽  
Children And Young People ◽  
Adults And Children ◽  
Presymptomatic Genetic Testing

AbstractIn 2020, the Human Genetics Society of Australasia released its Position Statement on Predictive and Presymptomatic Genetic Testing in Adults and Children. This Position Statement synthesizes the major practical, psychosocial and ethical considerations associated with presymptomatic and predictive genetic testing in adults who have the capacity to make a decision, children and young people who lack capacity and adults living with reduced or fluctuating capacity. Recommendations include that predictive testing in adults, young people and children should only be offered with pretest genetic counseling and the option of posttest genetic counseling. An individual considering (for themselves or on behalf of another) whether to have a predictive test should also be supported to allow them to make an autonomous and informed decision. Predictive testing should only be offered to children and young people for conditions where there is likely to be a direct medical benefit to them through surveillance, use of prevention strategies or other medical interventions in the immediate future. Where symptoms are likely to develop in childhood, in the absence of options to implement surveillance or risk reduction measures, genetic health professionals and parents/guardians should discuss whether undertaking predictive testing is the best course of action for the child and the family as a whole. Where symptoms are likely to develop in adulthood, the default position should be to postpone predictive testing until the young person achieves the capacity to make their own autonomous and informed decision.

scholarly journals cartografia infantil: enfoques metodológicos seguidos de experiências com crianças e jovens de portugal e brasil

2021 ◽  
Vol 17 ◽  
pp. 01-24
Author(s):  
Tiago Almeida ◽  
Luciano Bedin Costa
Keyword(s):  
Young People ◽  
Research Methodology ◽  
Children And Young People ◽  
Research Perspectives ◽  
The World ◽  
Adults And Children

This article has a double objective that aims to situate, theoretically and empirically, children's cartography as a research methodology. In a first movement, we will situate children's cartography in its epistemological and philosophical bases, having as inspiration the cartographic conceptions of the philosophy of Deleuze & Guattari and his commentators. The introduction of  cartography with children shifts our research perspectives to include dimensions that were once imperceptible or relegated to a plane of lesser value: it maps, not just what children see, but what they say, and chronicles the coexistence of children and the  world in ways not previously available to adult-organized research vehicles. We illustrate by chronicling two cartographic experiences carried out with children and young people from Portugal and Brazil, and finish with a reflection on how researchers might configure mapping experiences that act to open the worlds of adults and children to each other. 

Health

Child Poverty ◽  
2020 ◽  
pp. 117-136
Author(s):  
Morag C. Treanor
Keyword(s):  
Mental Health ◽  
Young People ◽  
Strong Association ◽  
Health Condition ◽  
Poor Mental Health ◽  
Poor Health ◽  
Health It ◽  
Children And Young People ◽  
Adults And Children ◽  
Increasing Risk

Chapter seven focuses on health. It explores how poor health can be a risk, cause and consequence of poverty. It illuminates the ways in which poor health has particularly strong consequences for children and young people. There is a strong association between health and poverty with poor health being a universally accepted predictor of poverty across time and place. What is less well-known is that the association is bi-directional, that is that poverty also causes poor health. Even short-term falls in income increase the risk of ill health (Smith and Middleton, 2007: 58). This reverse causal relationship is strong and is also seen in people with disabilities: those who become disabled are more likely to have been poor beforehand. Another facet of health that is important to the study of children living in poverty is whether the health condition is physical or mental. Poverty is strongly related to poor mental health in adults and children. Furthermore, children are increasingly presenting with poor mental health themselves. This chapter focuses predominantly on mental health as an increasing risk to the wellbeing and outcomes of children living in poverty now and in the future.

scholarly journals Human Genetics Society of Australasia Position Statement: Genetic Testing and Personal Insurance Products in Australia

2018 ◽  
Vol 21 (6) ◽  
pp. 533-537 ◽  
Author(s):  
Ainsley J. Newson ◽  
Sam Ayres ◽  
Jackie Boyle ◽  
Michael T. Gabbett ◽  
Amy Nisselle
Keyword(s):  
Genetic Testing ◽  
Professional Education ◽  
Human Genetics ◽  
Insurance Industry ◽  
Active Role ◽  
Position Statement ◽  
Personal Genome ◽  
Genetic Test Results ◽  
The Impact ◽  
Personal Insurance

The expansion of genetic and genomic testing in clinical practice and research and the growing market for at home personal genome testing has led to increased awareness about the impact of this form of testing on insurance. Genetic or genomic information can be requested by providers of mutually rated insurance products, who may then use it when setting premiums or determining eligibility for cover under a particular product. Australian insurers are subject to relevant legislation and an industry standard that was updated in late 2016. In 2018, the Human Genetics Society of Australasia updated its position statement on genetic testing and life insurance to account for these changes and to increase the scope of the statement to include a wider scope of insurance products that are not rated according to community risk, such as life, critical care, and income protection products. Recommendations include that providers of professional education involving genetics should include ethical, legal, and social aspects of insurance discrimination in their curricula; that the Australian government take a more active role in regulating use of genetic information in personal insurance, including enacting a moratorium on use of genetic test results; that information obtained in the course of a research project be excluded; and that there is improved engagement between the insurance industry, regulators, and the genetics profession.

scholarly journals Youth perspectives on genetic inheritance, carrier status and disclosure

2016 ◽  
Vol 3 (2) ◽  
pp. 21-28
Author(s):  
Alpha-Umaru Barrie
Keyword(s):  
Genetic Testing ◽  
Young People ◽  
Best Practice ◽  
Basic Knowledge ◽  
Carrier Status ◽  
Current Guideline ◽  
Bleeding Disorders ◽  
Genetic Inheritance ◽  
Children And Young People ◽  
Medical Benefits

Abstract Knowledge about genetic inheritance as a concept in children and young people with bleeding disorders is synonymous, in many ways, with other inherited genetic conditions. Children and young people have a more physiological understanding of inheritance, but may hold mistaken and inaccurate beliefs in understanding basic genetics. There are complex ethical and social problems in the genetic testing of youngsters with bleeding disorders to establish carrier status. Current guideline recommendations indicate circumstances where clear psychosocial and medical benefits can be demonstrated. However, children and young people have a reduced capacity to understand the tests and their implications, and in many cases family communication may impact the extent of disclosure of genetic risk factors. This paper explores the genetics of inherited bleeding disorders, including basic knowledge of the concept of inheritance and reproductive risks. Carrier status in children and young people will be considered, drawing on legal rulings that may shed light on best practice in establishing carrier status based on genetic testing. Communication patterns within families around inherited bleeding disorders and the complicated process of disclosure will also be discussed.

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