Abstract:
Ethical challenges of genetic counselling for schizophrenia include effective
communication of critical scientific information in an easily understood manner by
patients and relatives, and the ability to ensure communication is unencumbered
by medical jargon. Levels of literacy in the target population may limit this
process, making it difficult for patients to attain the desired levels of informed
consent to make crucial decisions during genetic counselling. Multilingualism
in target communities may further complicate such communication. This paper
outlines the ethical principles, challenges and opportunities facing clinicians
when conducting genetic counselling for schizophrenia and how these might
be met, drawing on lessons from South African studies. The paper draws on
reflections of clinician and researcher experiences gained from clinical practice
or research on the genetics of schizophrenia and psychotic disorders in
South Africa. The context of genetic studies in schizophrenia is used to illustrate
the ethical challenges in genetic counselling for schizophrenia, both in clinical
and research settings. Attention is also drawn to multicultural and multilingual
populations, particularly where the preferred language lacks a well-developed
scientific language of communication for some of the genetic concepts that have
to be presented during the genetic counselling process. The authors describe the
ethical challenges and how to address these to empower patients and relatives
to make well-informed decisions despite these obstacles. Principles applied by
clinicians and researchers during the genetic counselling are described. Potential
solutions, including the establishment of community advisory boards to address
potential ethical challenges inherent to the genetic counselling process, are
also shared. Genetic counselling for schizophrenia still faces ethical challenges
which require a balance of principles of beneficence, autonomy, informed
consent, confidentiality and distributive justice, while striving to present accuracy in the science that guides the process. Evolution in language and cultural
competency therefore needs to occur alongside scientific advances in genetic
research. Key stakeholders need to partner and build capacity and expertise in
genetic counselling through the provision of funding and resources. The goal of
partnerships is to empower patients, relatives, clinicians and researchers to share
scientific information in a manner guided by empathy while retaining scientific
accuracy.
