The creation of a database for cancer screening: is the consent of clients required?

Professional caregivers have an obligation to maintain the privacy and confidentiality of all personal information given to them by their patients or clients. Such information is to be released to a party who is not participating in the care of the patient only with the express consent of the patient. The question is whether or not the express consent of a client of an organized cancer screening program is ethically required before the client's personal information is entered into a centralized database. The arguments in favour of express consent are grounded largely in a desire to respect clients' privacy and autonomy fully. The arguments for the reliance on nonexpress, implied or tacit consent are based chiefly on the desire to provide clients with the full benefits of screening. It is suggested here that neither extreme position is satisfactory. A novel, balanced approach that would be sensitive to both electronic data storage and a preventive care situation is needed. Progress on this issue requires focused empirical research, a debate in both professional and public forums, and further critical analysis.

Variations in the management and outcome of non-small cell lung cancer in Ontario.

Prospectively gathered information in the Ontario Cancer Foundation's computerized clinical database was analysed to provide a description of the management of 12,399 patients with unresected non-small cell lung cancer (NSCLC) registered at seven regional cancer centres in Ontario between 1982 and 1991. Overall, 44% received initial thoracic radiotherapy, 19% received initial radiotherapy to metastatic sites, and 36% received no immediate radiotherapy. Of those who received thoracic radiation 41% received doses > or = 40 Gy and 59% received doses < 40 Gy. Among the seven centres, the proportion of patients receiving initial thoracic radiotherapy ranged from 41% to 56% (p < 0.001), and the proportion of those receiving doses > or = 40 Gy ranged from 30% to 68% (p < 0.001). Between 1982 and 1991, the overall proportion of patients who received initial thoracic radiotherapy decreased from 48% to 38%, the proportion of those receiving high dose treatment decreased from 55% to 28%, and the mean number of fractions given to the chest decreased from 17 to 10. Only 10% received chemotherapy at any time, and that proportion ranged from 3% to 21% (p < 0.001) among the seven centres. Between 1982 and 1991 the proportion of patients receiving chemotherapy decreased significantly from 15% to 8% (p < 0.001) across the Cancer Foundation as a whole. These wide variations in management policies were not associated with any significant differences in survival, which was similar at all seven centres, and remained constant between 1982 and 1991.