Ethics and equity in rare disease research and healthcare

Επιστημονική δημοσίευση - Άρθρο Περιοδικού uoadl:2946971 5 Αναγνώσεις

Μονάδα:
Τμήμα Κοινωνικής Θεολογίας και Θρησκειολογίας
Τίτλος:
Ethics and equity in rare disease research and healthcare
Γλώσσες Τεκμηρίου:
Αγγλικά
Περίληψη:
Rapid advances in next-generation sequencing technology, particularly whole exome sequencing and
whole genome sequencing, have greatly affected our understanding of genetic variation underlying rare
genetic diseases. Herein, we describe ethical principles of guiding consent and sharing of genomics research
data. We also discuss ethical dilemmas in rare diseases research and patient recruitment policies
and address bioethical and societal aspects influencing the ethical framework for genetic testing. Moreover,
we focus on addressing ethical issues surrounding research in low- and middle-income countries.
Overall, this perspective aims to address key aspects and issues for building proper ethical frameworks,
when conducting research involving genomics data with a particular emphasis on rare diseases and genetics
testing.
Έτος δημοσίευσης:
2021
Συγγραφείς:
Maria Koromina
Vasileios Fanaras
Gareth Baynam
Christina Mitropoulou
George P Patrinos
Περιοδικό:
Personalized Medicine
Εκδότης:
Future Medicine Ltd
Τόμος:
4
Αριθμός / τεύχος:
2
Σελίδες:
1-10
Λέξεις-κλειδιά:
bioethics • ELSI • ethical frameworks • genetics testing • genomics • LMICs • patient engagement • patient recruitment • public health • rare diseases
Κύρια θεματική κατηγορία:
Επιστήμες Υγείας
Επίσημο URL (Εκδότης):
DOI:
10.2217/pme-2020-0144