5. Current and Unresolved Issues
Consent for future research
Other issues involve consent for research that will extend over a period of time. In doing research on degenerative diseases, e.g. Alzheimer’s disease, we do not know that a person who consented when competent is willing to continue participation in research after s/he has experienced cognitive and emotional changes and whose cognitive capacity is questionable. In such situations a research advance directive may be helpful. A research partner or other person may be able to give substitute or surrogate consent and/or, as an advocate who knows the person well, judge whether the advance directive should be followed. In such situations, the consent process should include information on whether the data can be used if the participant withdraws from the research, and whether follow-up information can be sought.