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author:("sickle, D")
2.  Concerns over confidentiality may deter adolescents from consulting their doctors. A qualitative exploration 
Journal of Medical Ethics  2006;32(3):133-137.
Young people who are concerned that consultations may not remain confidential are reluctant to consult their doctors, especially about sensitive issues. This study sought to identify issues and concerns of adolescents, and their parents, in relation to confidentiality and teenagers' personal health information.
Recruitment was conducted in paediatric dermatology and general surgery outpatient clinics, and on general surgery paediatric wards. Interviews were conducted in subjects' own homes.
Semistructured interviews were used for this exploratory qualitative study. Interviews were carried out with 11 young women and nine young men aged 14–17. Parents of 18 of the young people were interviewed separately. Transcripts of tape recorded interviews provided the basis for a framework analysis.
Young women were more concerned than young men, and older teenagers more concerned than younger teenagers, about people other than their general practitioner (GP) having access to their health information. Young people with little experience of the healthcare system were less happy than those with greater knowledge of the National Health Service (NHS) for non‐medical staff to access their health information. As they grow older, adolescents become increasingly concerned that their health information should remain confidential.
Young people's willingness to be open in consultations could be enhanced by doctors taking time to explain to them that their discussion is completely confidential. Alternatively, if for any reason confidentiality cannot be assured, doctors should explain why.
PMCID: PMC2564464  PMID: 16507655
confidentiality; medical records; young people; rights of children; parental view
5.  The ethics of screening: is 'screeningitis' an incurable disease? 
Journal of Medical Ethics  1994;20(1):12-18.
Screening programmes are becoming increasingly popular since prevention is considered 'better than cure'. While earlier diagnosis may result in more effective treatment for some, there will be consequent harm for others due to anxiety, stigma, side-effects etc. A screening test cannot guarantee the detection of all 'abnormal' cases, therefore there will be false reassurance for some. A proper consideration of the potential benefit and harm arising from screening may lead to the conclusion that the programme should not be offered. A modified utilitarian approach may be used for allocation of scarce resources in health care. Ethics has an important role in this evaluation.
PMCID: PMC1376367  PMID: 8035433
6.  'Inside-out', back-to-front: a model for clinical population genetic screening. 
Journal of Medical Genetics  1993;30(7):580-582.
Developments in DNA technology have resulted in a dramatic increase in the number of genes identified. With the localisation of a gene it is possible to devise procedures suitable for mass carrier screening programmes. Until recently mass carrier screening was only possible for a limited number of disorders, for example, Tay-Sachs disease and haemoglobinopathies. Counselling possible carriers was based on estimations of risk. The momentum towards mass carrier screening is likely to be increased by gene therapy. Carrier screening for cystic fibrosis alone will have dramatic implications for genetic service provision as 4 to 5% of the UK population carry the CF gene. The potential for genetic screening of multifactorial diseases, for example, cancers, should also be considered. The existing organisation of genetic services is likely to be inadequate. A new specialty of clinical population genetics is required. A model is proposed of clinical population genetic screening programmes, organised under a 'common umbrella' led by a public health physician, while screening and follow up will remain the responsibility of the appropriate clinician.
PMCID: PMC1016458  PMID: 8411031
7.  Knowledge and perceptions of haemoglobinopathy carrier screening among general practitioners in Cardiff. 
Journal of Medical Genetics  1989;26(2):109-112.
A questionnaire was sent to 164 principal general practitioners working in Cardiff. A response rate of 81% was achieved. A total of 70% of respondents had had professional contact with a carrier for thalassaemia and a similar number for sickle cell disease, while 57% had recommended that a patient should be screened for haemoglobinopathy status. GPs tended to underestimate greatly the prevalence of haemoglobinopathies in South Glamorgan, and were uncertain of the ethnic minorities that were at particular risk. A carrier screening programme was considered justified by the majority of GPs in Cardiff and reasons for this opinion were examined. However, before a screening programme is started, information on whom to screen and their relative risk needs to be made more widely available.
PMCID: PMC1015560  PMID: 2918538

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