Demonstrated Consent and the Common Good: On Withdrawal of Consent in Stem Cell Research

Demonstrated Consent and the Common Good: On Withdrawal of Consent in Stem Cell Research
Open Peer Commentaries
Tijs Rosema, Martine de Vries, Hanna Lammertse, Roland Bertens, Nienke de Graeff
American Journal of Bioethics, 7 April 2025
Excerpt
    Barnes et al. (Citation2025) argue that demonstrated consent enhances donor autonomy. This is because demonstrated consent offers donors “ongoing accessibility of information according to donor preferences” and so gives donors “actionable rights to reassess or withdraw consent” (Barnes et al. Citation2025, 99).
Since demonstrated consent uses broad consent as default, it allows researchers to conduct various research projects based on a single initial consent procedure, and so helps contribute to societal interests (Barnes et al. Citation2025). Therefore, demonstrated consent meets the so-called “balance criterion” which Barnes et al. (Citation2025) introduced to underline that informed consent frameworks should also balance donor autonomy with broader societal interests, including progress in science and medicine.
But what does the balance criterion imply for situations in which donor autonomy leads to significant negative consequences for societal interests? This question may arise when donors withdraw their consent. By taking stem cell research as an example, we reason that although demonstrated consent enhances donor autonomy, the exercise of donor autonomy by withdrawing consent should not always lead to the discontinuation of research.
We argue that the right of withdrawal can be limited in stem cell research if a donor is properly informed about limits of withdrawal when providing initial consent. Additionally, we see opportunities for demonstrated consent to compensate for this proposed limitation of donor autonomy. We thus provide a more detailed elaboration on demonstrated consent and the balance criterion in the context of stem cell research…