A clash in perception is taking place. Some perceive predictive genetic testing in young people to be too potentially harmful to allow. Others perceive it to be an opportunity for benefit, even an opportunity for the prevention of harm. In this thesis I consider the issue of potential harm to mature young people who seek predictive genetic tests. / There are two parts to this thesis. In part one (chapters 1-4) I provide a background to the current debate. I describe the prohibitive stance purported within current guidelines, the arguments used to justify this stance and the opposition that has arisen in response. I discuss the psychological and social ways in which young people differ from adults, arguing that it is likely young people will react differently from adults in response to predictive genetic tests. However, I conclude that the lack of empirical evidence means we are unable to determine if these differences will confer a greater potential for harm or benefit when young people are tested. Finally, I present a discussion of two fundamental gaps in our knowledge about testing in young people: a lack of knowledge about current practice and a lack of first-hand evidence about the effects of testing. I argue that empirical research is required. / In part two of this thesis (chapters 5-7) I present the findings of my own empirical research. Firstly, I describe the findings of an international survey of clinical geneticists. Secondly, I describe the outcomes of 18 in-depth interviews performed with young people who have experienced predictive genetic testing for either Familial Adenomatous Polyposis or Huntington Disease. These young people ranged in age from 14 to 25 years. / The international survey uncovered 49 cases where predictive genetic tests had been provided to young people for non-medical reasons. When such tests are provided, the impacts are rarely followed-up as part of a formal research protocol. Clinicians’ reasons for providing and refusing tests are highly varied and are driven more by the nuances of individual cases than by any one ethical principle or set of guidelines. / When young people talk about the predictive genetic tests they have experienced, they refer to the entire experience of being at risk of a genetic condition, not simply the time after receipt of their test result. Young people speak about a far more extensive range of harms and benefits associated with the testing process than have been previously researched. / I argue that some young people growing up at risk of a genetic condition suffer several harms prior to their request for predictive genetic testing, because of their risk status. I argue that when we understand this, it becomes clear that for these mature young people who seek such testing, the provision of a test may not only serve to alleviate some of these harms, but may in fact create benefits for them, irrespective of their test result. In these cases, the provision of a predictive genetic test is appropriate, logical and ethical.
| Identifer | oai:union.ndltd.org:ADTP/245545 |
| Creators | Duncan, Rony Emily |
| Source Sets | Australiasian Digital Theses Program |
| Language | English |
| Detected Language | English |
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