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FIG. 8, PANELS 1–10
1 While there is an implicit assumption that connection is desirable to
patients and families, there is also the openness of informed consent
embedded within the process of use. Patients may, however, also use the
to inform their decision against undergoing the tests.
2 Our own team addressed genetics, and its legacies related to eugenics, in
our discussion. It was also discussed at length at the workshop in 2022.
Recently, renewed interest in the media has exposed histories of forced
sterilization of people with genetic diseases (e.g., Associated Press 2023).
While these ethical dilemmas and historical contexts go beyond the scope of
our paper, the genetic counselor and clinician on our team noted that they
take patient autonomy as central to their work.
3 We focus on the risk associated with choosing whether to undertake ,
with the aim of ending the diagnostic odyssey. There are other risks
associated with the results of obtaining a negative . For example, families
(and physicians) could think that negative means that the patient’s
disease is not genetic, which is not always the case. This misconception could
have negative or unintended consequences for the patient and family. For
example, a genetic diagnosis could later lead to treatment, even if not
immediately available, as biomedicine and pharmacology improve over time.
4 “Nudge” emerged as a term in the decision-making medical literature in
2008. In a book by Thaler and Sunstein (2008), an architecture of presenting
choices about one’s health is exposed through a number of experiments. The
idea behind these techniques is to set up the decision space (either material
or ideal) in such a way that people are meant to make the healthy choice. In
the original experiments, this included things like putting fruit beside cake in a
lunch buffet, as people know that fruit is the healthier choice and are more
likely to choose that instead of the sweet treat. In , the tool was
informed by nudge techniques insofar as it assisted the user in a visualization
of the decision space. It ranks the user’s choices according to their values, so
that they can make the decision about taking the test according to these
values. So, it does not necessarily guide a particular choice but rather sets up
the choice about whether to take the test according to the elicited responses
from the user.
5 Mykhalovskiy (2003) has described as a “fundamentally text-
mediated” approach to creating systemic and individual changes in medicine
(see also Mykhalovskiy and Weir 2004).
6 How variants are recognized also involves biostatistical methods and an
epidemiological style of thought, which is one of the ways these two styles of
thought overlap. While we do not address this in this chapter, it is significant to
note that the dominant style of thought, the epidemiological one (which
underpins ), is informing the molecular gaze. The clinical aspects of
diagnosis remain epidemiological. The molecular aspects tend to remain in the
biomedical, although the two are related in thought as well as institutional
spaces.
7 We direct the reader to Borck and Meunier's chapter on interceptive
biomedicine in this volume, “Imaginary Imaging.”
8 Genetics has also been working to decouple from essentialist
understandings. This has happened through genomic education (Duncan et al.
2024), new textbooks for medical education (Donovan et al. 2024), and
classroom approaches (Donovan et al. 2024).
9 With improvements in technology, graphic medicine may be further
personalized, such as designing one’s avatar prior to reading the comic.
Artificial intelligence can render new forms of art quickly, and this may be a
further limitation to the comic form in future.
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