Boddington Paula, Gregory Maggie
Ethox Centre, Department of Public Health and Primary Care, University of Oxford, Badenoch Building, Old Road Campus, Headington, Oxford, OX3 7LF, UK.
J Genet Couns. 2008 Dec;17(6):509-21. doi: 10.1007/s10897-008-9168-x. Epub 2008 Aug 29.
Testing for carrier status for various genetic conditions often takes place during adolescence or young adulthood. This paper aims to add to the discussion of when is the best time to test through an examination of how the law on medical treatment of children appears to be used in practice and how a careful examination of legal rulings might shed light upon best practice in this area. Our focus is on the Gillick ruling (Gillick v West Norfolk and Wisbech Area Health Authority 1986), which dealt with consent and confidentiality with respect to the provision of contraceptive advice to under 16-year-olds, but which has become a general benchmark for consent to medical treatment within UK law. In addition, we draw upon data from a qualitative research study which indicates potential problems with certain practices in respect of the influence of the Gillick ruling on carrier testing procedures. We present evidence that in at least some instances, adolescents have reduced capacity to grasp fully the implications of carrier test results. In the light of our findings we make recommendations for practice concerning the testing of children and young persons.
针对各种遗传疾病的携带者状态检测通常在青春期或青年期进行。本文旨在通过审视儿童医疗法律在实际中的应用方式，以及仔细研究法律裁决如何为该领域的最佳实践提供启示，来补充关于何时进行检测最佳时机的讨论。我们关注的是吉利克裁决（吉利克诉西诺福克和威斯贝奇地区卫生局，1986年），该裁决涉及向16岁以下青少年提供避孕建议的同意和保密问题，但已成为英国法律中医疗同意的一般基准。此外，我们借鉴了一项定性研究的数据，该数据表明吉利克裁决对携带者检测程序的影响在某些做法上存在潜在问题。我们提供的证据表明，至少在某些情况下，青少年充分理解携带者检测结果含义的能力有所下降。根据我们的研究结果，我们就儿童和青少年检测的实践提出建议。
