ELSIcon2022 • Panel • June 3, 2022
Benjamin Berkman, Susanna McGrew, Leila Jamal
In Western bioethics, patient choice and autonomy have historically carried the most weight in conversations about the ethics of using genetics and genomics in healthcare and research. Given the rapid upscaling of genomic sequencing in a wide variety of settings, and in light of new tools for obtaining informed consent and offering choices about genomic tests, we see a need to revisit this wholesale deference to patient autonomy at the expense of other important values. One important question is: How much influence is it acceptable for healthcare providers, researchers, and genomic testing companies to exert over individuals and families considering genomic sequencing? In a series of three separate but related talks, we will explore this question and offer new normative frameworks for answering it. The first presenter will discuss recent empirical data on the motivations of research participants who chose not to learn medically actionable genetic findings about themselves. The second presenter will discuss a framework for analyzing the ethical appropriateness of utilizing choice-masking nudges when obtaining consent from research subjects. The final presenter will explore whether the concept of non-directiveness should remain as a cornerstone principle in the field of genetic counseling, particularly given recent advances in genomic medicine. These ideas all represent controversial re-examinations of established arguments, which we hope will spur a spirited debate about the panel's views. We also hope that the conversation can touch on the more conceptual issue of if/when/how the ELSI field should update concepts that have outlived their original moment.