Similarly, panels at the ELSI Congress suggested various approaches to addressing the issues raised by biobanking, the research it facilitates, and its public implications. One presentation offered a multi-method approach to engaging parents in dialogue and policy-making efforts on the use of residual newborn screening samples [B-4, Anderson]. Given the challenges of informed consent in the biobanking context, where it is impossible to know all possible future research uses for samples at the time they are donated, one paper suggested an alternative model based on clinical advance directives, which bestow the ethical authority for future decision-making on a surrogate [D-4, Solomon]. Another panel discussed Vanderbilt University’s model of “human non-subjects research” using de-identified samples from clinical treatment [E-2]. Under this model, risks are minimized through governance, while patients are offered annual opportunities to opt out of future research. Alternately, as described above, the “Informed Cohort” model provides a particularly collaborative approach in which “personally controlled health records” facilitate communication and the return of individual research results [B4, Clinton].
