Increasing numbers of health care users may be confronted with new genetic knowledge and discoveries that offer new types of medical decision-making. How people use these new insights and make decisions about genetic risk depends, at least in part, on their knowledge and attitudes about human genetics.
A postal survey administered to 560 women who had been offered prenatal screening in Ontario measured knowledge about, and attitudes toward, genetic testing and the uses of genetic information.
Respondents strongly supported the use of genetic information to improve disease diagnosis and to help understand disease causes; however, people also held a more critical attitude towards certain aspects of testing and genetic information. Relatively high levels of knowledge about genetics were also observed in this sample, although there were deficits in specific areas (e.g., transmission patterns).
Despite overall positive attitudes towards genetics, participants held more critical attitudes towards certain aspects of testing and the uses of genetic information. It would be unwise for genetics policy-makers and stakeholders to assume that a better-informed public would automatically be more supportive of all genetics research and new genetic discoveries.
The objective was to assess the impact of different levels of risk of disease on a woman's preferences for health states. Women were provided with health scenarios incorporating different levels of lifetime risks for breast cancer, hip fracture, and coronary heart disease (CHD). In this way, we were able to determine the incremental effect of changes in risks of each disease on preference values.
Preference values and utility scores were obtained for six health scenarios by both the feeling thermometer (FT) and standard gamble (SG) methods. Scenarios presented the different lifetime risks of CHD, breast cancer, and hip fracture associated with and not associated with long-term use of hormone replacement therapy (HRT) and raloxifene. Risks of breast cancer were based on perceived risks and population risks. The sample population consisted of 40 healthy female volunteers aged between 45 and 65 years randomly selected from the Ottawa-Carleton district.
Based on their perceived risk of breast cancer, the women had higher value scores for the raloxifene risk profile than for both HRT (p = .002) and no therapy (p = .003), with similar results for analyses based on population risks and from utility scores. Regression analysis showed that the risk of breast cancer (p
The primary objective was to identify the lessons learned and issues addressed by the Disease Site Group (DSG) developing guidelines on lung cancer for practitioners in the province of Ontario.
The minutes of the Ontario Lung Cancer Disease Site Group (LCDSG) and the meeting notes of a medical sociologist who attended all LCDSG meetings were reviewed to identify the disease-specific and generic issues addressed by the LCDSG during guideline development.
The Ontario LCDSG has completed three practice guidelines and has five evidence-based recommendations (EBRs) in production. Topics for guideline development were selected on the basis of known practice variability (eg, advanced-stage non-small-cell lung cancer [NSCLC]); the size of the patient population that could potentially be affected by the guideline; results of phase II trials of new and potentially expensive agents (vinorelbine, paclitaxel, and docetaxel); and randomized controlled clinical trials that support new practice standards (combined modality therapy for unresectable stage III NSCLC). The wording of each EBR reflects the strength and quality of the evidence in support of the treatment option, the primary outcome(s), and the individual physician and discipline values concerning treatment outcomes in the absence of known patient values.
Creutzfeldt-Jakob disease (CJD) is the first major challenge that the blood system has faced since the completion of the Krever inquiry in 1997. We report the results of a detailed policy analysis comparing 2 CJD-related decisions: a 1995 recall of blood from a donor with classic CJD and the 1999 decision to defer donations from individuals with a 6-month travel history to the UK between 1980 and 1996 due to concerns related to variant CJD. Overall, we observed that decision-making improved significantly from 1995 to 1999. In 1998/99 the potential threat of variant CJD was identified at an early stage, and a systematic risk assessment process was initiated. Decision-making was consultative and involved consumers. However, the perception existed that further improvement could take place in the areas of transparency of process and interaction of organizations. We observed that the presence of a second operator had an important impact on decision-making in 1998/99.
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