Добавил:
Sekretar
kiopkiopkiop18@yandex.ru
t.me/Prokururor I Вовсе не секретарь, но почту проверяю
Опубликованный материал нарушает ваши авторские права? Сообщите нам.
Вуз:
Предмет:
Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_5553_Библиотеки_им_академика_М_И_Перельмана
.pdf
medicine symbolize proof that collaborations between the social
sciences, biomedicine, science communication, and graphic medicine
are valuable and can inform alternative ways of conceiving risk.
However, our team has yet to test this concept in practice, and we
hope to obtain funding to do so with our clinician collaborators in the
future. For example, one of our major revisions to has been
to drop the musical metaphor for an accessible and literal depiction of
the testing process. This change was made on theoretical grounds
and will need to be tested for efficacy in transmitting the concept
alongside or as a stand-alone informatic. We have attempted
to foster a moral economy of hope by reframing information already
transmitted in an existing decision-making aid. We intend to empower
patients to feel more confident in making complex health decisions,
using concepts in the sociology of anxiety and risk (Hunt 2003).
Whether these images do improve the users’ affective experiences
around decision-making in a way that makes them feel connected to
a biosocial community requires further investigation. The comic will
also require further group testing with patient groups, patient
activists, and patients to ensure it resonates with their values and
preferences.
This tool was developed for parents as the most likely decision-
makers for a child with a suspected genetic disease as part of a
more comprehensive decision-making process. While this was our
focus, the effects of genetic testing extend well beyond the individual.
Future research could consider dedicated tools for children and family
members and may also consider the ethics of informed consent for
health decisions that extend beyond the patient. It is not our intention,
however, to suggest that these tools would substitute for the human
relationships of the clinic. Aids are meant to complement clinical
practice but not replace it. Genetic counseling is a significant part of
the communication and decision-making process and the biosocial
relationships facilitated by genomic medicine.
Specific to the artistic collaboration process, one constraint was
translating social and scientific principles into images. One of the
most challenging aspects of the translation process involved styling
the subject. Our attempt to encourage personal self-reflection came
across two roadblocks. First, we found it an ongoing challenge to
differentiate the patient and the persons impacted by the decision
from the individual making the decision. While, commonly, patients
make their own decisions and accept the personal risks of undergoing
treatment, genetic testing is often done on and for others, such as on
a child with neurodevelopmental or physical disabilities. The subject of
this intervention was shifting and multiple, reflecting a more
interconnected and relational subject than the medium seemed to
permit.
One limitation that warrants further research is the tension
between personalization and representation. Our initial attempts at
representing the subjects in the aids without cues to gender or race
resulted, in retrospect, perhaps obviously, in an alien appearance.
These undermined the affective dimension we wanted to foster.
But communicating these aspects inevitably drew on hegemonic
representations of race, gender, and sexuality, which may also,
inevitably, alienate some people. Similar tensions in representation
have been cited in discussions of sexual orientation, e.g., with regard
to gingerbread persons (Jourian 2015). The problem of urging people
to see themselves will become stronger as the personalization of
medicine homes further in on narrower risk groups and conditions.
Striking a balance between humanization and biased representations
may be a future challenge for personalized medicine. Our comic
extends Epstein’s (2008) critique of diversification or balkanization of
healthcare research to patient outreach and education materials. As
treatments become specialized for a specific community, group, or
indeed the individual, educational materials may encounter challenges
around how the “you” that a tool addresses can be represented. We
might reflect on whether it is possible or desirable to illustrate a
person’s independence from the webs of interconnection in which
they are constituted. Our sociological analysis has approached the
tool as a product of medical knowledge that aims to assist in
decision-making, which could impact a family’s life. Given our
theoretical commitments, s themselves have been thought to
inscribe power into the capacity of individuals to choose to accept
risks. From the standpoint of reflexivity, future research could assess
our assumptions and their integration into the tool. Questions could be
raised about how power is inscribed through our illustrations.
Moreover, one might question whether the reinscription of power
reflective of shared decision-making is possible or desirable. While
the authors have written elsewhere (Hanemaayer 2019; 2022;
Christianson 2024) that decision-making guidelines and aids can have
FIG . 7
9
antithetical effects and consequences that affect their intended aims,
our collaboration raises questions about the individualizing nature of
clinical decisions. A transdisciplinary collaboration has illuminated the
various objectives of the team: the clinicians have aimed to improve
their ability to provide patients with the information and treatment they
need to live their lives, the illustrators have aimed to communicate
complex ideas in accessible and fruitful ways, and sociologists have
concerned themselves with the implicit assumptions within the
decision aids. Our collaborations have had their odysseys, which
have raised further questions about the circumstances within which
families need to make such decisions, how the arts can be impactful
and empower patients through representations of connectedness and
hopeful affect, and how clinical knowledge can be used to amplify the
biosociality of the human condition.
Соседние файлы в папке Библиотека им академика М.И. Перельмана