Sociocultural limits in informed consent in dementia research

Ethical considerations in obtaining informed consent for dementia research have remained a largely neglected issue with respect to recruiting members of ethnic minorities and low-income groups. After briefly sketching the development of informed consent guidelines in the United States, this article focuses on the complex interactions between minority culture and low socioeconomic status as inhibiting factors in the informed consent process. We note that, at a minimum, freely given informed consent rests on the potential participant's belief that he or she is totally free to say "no." Suggestions are presented for making the informed consent more ethically constructive for members of socially underpowered populations.