The purpose for which personal medical data is being used may be just as important as consent, according to a survey published in Annals of Internal Medicine.
Patient-level health information has substantial value across a range of uses and is becoming more widely available as use of electronic health records (EHR) increases. As such, there has been considerable debate about patient consent. Some argue that health data should not be used without consent and others argue that consent for every use is infeasible and that a blanket opt-in should be employed. The rationale is that patients may have some obligation to share information for socially beneficial purposes. Researchers surveyed 3,064 people to examine public support for secondary uses of electronic health information under different types of consent agreements. Survey participants were presented with hypothetical scenarios of different uses of patient data. For each scenario, the purpose for which data were used varied, as did the level of detail provided and whether consent was obtained. Responses were complex and indicate that obtaining consent is important, but the purpose of the use of health information is also important. The authors suggest that social value of the information being used may need to be emphasized.
A related commentary also published in Annals of Internal Medicine discusses the recent publication of a study conducted by Facebook without participant consent. The article examines the ethics of corporate research with regard to consent as more and more information is shared online.