Public and Patient Attitudes Toward the Use of Their Health Information: A Review of the Literature

Data protection legislation and professional guidelines in a number of countries have been criticized by researchers and epidemiologists who claim that there will be disastrous consequences for epidemiological activities such as cancer registration and communicable disease surveillance (see, e.g., Doll and Peto, 2001; Helliwell, 2001; U.K. Association of Cancer Registries, 2000). There is an expectation that if the public are asked to give consent, then they will either explicitly refuse or not

respond to requests for consent. Consequently, this would introduce significant volunteer bias into databases and limit the utility for public health purposes. The Data Protection Act 1998 does limit the requirement to obtain consent or to inform data subjects according to what is practicable, reasonable, or requires disproportionate effort. Empirical evidence of adverse consequences and the difficulties involved in approaching patients would be required to justify use of personal data without seeking consent or giving data subjects an opportunity to object. This chapter is based on a review of the literature to assess public attitudes to privacy and use of personal health information. Although the attitudes examined in this chapter are generic in nature, they are equally applicable to the use of health information in the public health GIS field.