Table 1.
Respondents' views on cancer registration and privacy
|
Question
|
“Yes”
|
“No”
|
“Don't know”
|
|||
|---|---|---|---|---|---|---|
| No of respondents* | % (95% CI) | No of respondents* | % (95% CI) | No of respondents* | % (95% CI) | |
| 1 To begin, could I please start by asking if you have, or you have ever had, cancer? | 174 | 6 (5 to 7) | 2701 | 94 (93 to 95) | — | — |
| 2 And have any members of your immediate family (for instance, parents, children, husband/wife/partner, brothers, sisters) ever had cancer? | 1298 | 45 (43 to 47) | 1528 | 53 (51 to 56) | 50 | 2 (1 to 2) |
| 3 Many people get letters from their primary care trust (previously called the health authority) about screening tests for cancer, such as cervical smear tests or bowel cancer screening. If your primary care trust sent you a letter inviting you to a screening test, do you think this would be an invasion of your privacy? | 93 | 3 (2 to 4) | 2740 | 95 (94 to 97) | 39 | 1 (1 to 2) |
| 4 In the UK we have the National Cancer Registry, which is a confidential NHS database of people who have cancer. Have you ever heard of the National Cancer Registry before? | 479 | 17 (15 to 18) | 2362 | 82 (81 to 84) | 32 | 1 (1 to 2) |
| 5 The National Cancer Registry is the only reliable source of information for monitoring trends in the risk of getting cancer and trends in cancer survival. The information is used to compare the effectiveness of cancer treatment around the country, and to evaluate the success of cancer screening programmes. Do you think this is useful information for us to have in this country? | 2737 | 95 (94 to 96) | 68 | 2 (2 to 3) | 69 | 2 (2 to 3) |
| 6 In the USA, Denmark, Sweden, and many other countries, all cases of cancer have to be notified to the cancer registry by law. In future, there may need to be a similar law in the UK, to ensure that the National cancer Registry continues to have the information needed for monitoring cancer in the UK. Would you support a new law that meant all cases of cancer have to be notified to the National Cancer Registry? | 2335 | 81 (79 to 83) | 343 | 12 (10 to 13) | 194 | 7 (6 to 8) |
| 7 Currently, cancer patients' postcodes are automatically included in the National Cancer Registry. This can help the registry tell, for example, if cancer is related to living around polluted areas. If you had cancer and your postcode was included in the National Cancer Registry, to be held confidentially and under strict security, do you think this would be an invasion of your privacy? | 243 | 8 (7 to 10) | 2533 | 88 (87 to 90) | 98 | 3 (3 to 4) |
| 8 Currently, survival rates from cancer can only be compared between regions of the country by knowing cancer patients' names and addresses. If you had cancer and your name and address was included automatically in the National Cancer Registry, to be held confidentially and under strict security, do you think this would be an invasion of your privacy? | 446 | 16 (14 to 17) | 2326 | 81 (79 to 83) | 101 | 4 (3 to 4) |
| 9 Finally, suppose that a research group from a university medical school wanted to do research with people who had a particular type of cancer. If you had cancer and the National Cancer Registry sent you a letter, via your doctor, asking if you wanted to take part in the research, do you think this would be an invasion of your privacy? | 261 | 9 (8 to 10) | 2508 | 87 (86 to 89) | 104 | 4 (3 to 5) |
Questions are in order asked in survey.
*
Denominators were 2873 weighted and 2869 unweighted, except for questions 1, 2, 3, and 6, which had small amounts of missing data.