Ethical issues in (pharmaco)genetics
Journal
Turkish Journal of Biochemistry, 2019; 44 (S3)
Date Issued
2019-10
Author(s)
DOI
https://doi.org/10.1515/tjb-2019-44s306
Abstract
Apart from genetic testing for diagnostic purposes, application of genetics in
human medicine encompasses genetic interventions and pharmacogenetical testing
which are becoming more frequently utilized in clinical practice, as well as genetic
studies employed in the process of research and drug development.
It’s been widely known and accepted that application of a drug in equal dosing
regimens for treatment of the same diagnosis in different patients, doesn’t produce
equal results regarding achievement of a therapeutic effect and/or occurrence
of side effects. Investigating the genetic cause for interindividual variations in
patients’ drug response and toxicity, pharmacogenetics holds valuable prognostic
and predictive value in tailoring the pharmacological treatment of various diseases
according to the principles of precision medicine.
But, just as any other medical testing, genetic analyses impose ethical risks which in
this case are even more serious due to the following specific features of these tests and
the obtained data: the “mutual” ownership of the genetic information by individuals
from the same family, the lack of precise phenotype-genotype correlation and the
influence of epigenetic and environmental factors on the phenotypic expression of
genetic information, the balance between the right of an individual “to know” and
the right “to not know” as well as the enormous potential for discrimination. The
rapid advancement of high throughput technologies delivering a mass of detailed
data on an individual’s genome introduces a lot of advantages in scientific and
clinical applications, but also threatens with a tremendous risk for misuse of these
data in various settings.
The lecture discusses the fundamental ethical principles applicable to genetic
analyses/studies including respect of the individual’s autonomy and privacy and
commitment to providing confidentiality, beneficence and justice. The informed
consent as well as the levels of anonymization in genetic testing as measures to
satisfy the above mentioned principles will be addressed. Special emphasis will be
placed on the ethical issues regarding orphan and rescued drugs emerging in the
pharmacogenetical testing within clinical studies in drug research and development.
Philosophers of science claim that science is morally neutral, it is actually the use
and implementation of science that can have positive or negative impact. Hence,
it is crucial to understand that achievement of our aim for humane application
of (pharmaco)genetics can only be accomplished if technological and clinical
advances in this field advance at a similar rate with the corresponding ethical
considerations.
human medicine encompasses genetic interventions and pharmacogenetical testing
which are becoming more frequently utilized in clinical practice, as well as genetic
studies employed in the process of research and drug development.
It’s been widely known and accepted that application of a drug in equal dosing
regimens for treatment of the same diagnosis in different patients, doesn’t produce
equal results regarding achievement of a therapeutic effect and/or occurrence
of side effects. Investigating the genetic cause for interindividual variations in
patients’ drug response and toxicity, pharmacogenetics holds valuable prognostic
and predictive value in tailoring the pharmacological treatment of various diseases
according to the principles of precision medicine.
But, just as any other medical testing, genetic analyses impose ethical risks which in
this case are even more serious due to the following specific features of these tests and
the obtained data: the “mutual” ownership of the genetic information by individuals
from the same family, the lack of precise phenotype-genotype correlation and the
influence of epigenetic and environmental factors on the phenotypic expression of
genetic information, the balance between the right of an individual “to know” and
the right “to not know” as well as the enormous potential for discrimination. The
rapid advancement of high throughput technologies delivering a mass of detailed
data on an individual’s genome introduces a lot of advantages in scientific and
clinical applications, but also threatens with a tremendous risk for misuse of these
data in various settings.
The lecture discusses the fundamental ethical principles applicable to genetic
analyses/studies including respect of the individual’s autonomy and privacy and
commitment to providing confidentiality, beneficence and justice. The informed
consent as well as the levels of anonymization in genetic testing as measures to
satisfy the above mentioned principles will be addressed. Special emphasis will be
placed on the ethical issues regarding orphan and rescued drugs emerging in the
pharmacogenetical testing within clinical studies in drug research and development.
Philosophers of science claim that science is morally neutral, it is actually the use
and implementation of science that can have positive or negative impact. Hence,
it is crucial to understand that achievement of our aim for humane application
of (pharmaco)genetics can only be accomplished if technological and clinical
advances in this field advance at a similar rate with the corresponding ethical
considerations.
Subjects
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