Ethical issues in medical-sequencing research: implications of genotype–phenotype studies for individuals and populations
MW Foster, RR Sharp - Human molecular genetics, 2006 - academic.oup.com
Advances and declining costs in sequencing technology will result in increasing number of
studies with individual sequence data linked to phenotypic information, which has been …
studies with individual sequence data linked to phenotypic information, which has been …
[HTML][HTML] Practical, ethical and regulatory considerations for the evolving medical and research genomics landscape
GJ Lyon, JP Segal - Applied & Translational Genomics, 2013 - Elsevier
Recent advances in sequencing technology are making possible the application of large-
scale genomic analyses to individualized care, both in wellness and disease. However, a …
scale genomic analyses to individualized care, both in wellness and disease. However, a …
[HTML][HTML] Ethical issues in contemporary clinical genetics
G Braverman, ZE Shapiro, JA Bernstein - Mayo Clinic Proceedings …, 2018 - Elsevier
As genetic sequencing capabilities become more powerful and costs decline, the reach of
genomics is expanding beyond research laboratories to the wards, outpatient clinics, and …
genomics is expanding beyond research laboratories to the wards, outpatient clinics, and …
Stewardship of human biospecimens, DNA, genotype, and clinical data in the GWAS era
SJ O'Brien - Annual review of genomics and human genetics, 2009 - annualreviews.org
An ethical quandary is emerging over custodianship of and access to DNA specimens and
attached data, clinical and genetic, held in large disease cohort collections. The balance of …
attached data, clinical and genetic, held in large disease cohort collections. The balance of …
[HTML][HTML] Development of a consent resource for genomic data sharing in the clinical setting
ER Riggs, DR Azzariti, A Niehaus, SR Goehringer… - Genetics in …, 2019 - Elsevier
Purpose Data sharing between clinicians, laboratories, and patients is essential for
improvements in genomic medicine, but obtaining consent for individual-level data sharing …
improvements in genomic medicine, but obtaining consent for individual-level data sharing …
[HTML][HTML] Developing a national newborn genomes program: an approach driven by ethics, engagement and co-design
A Pichini, A Ahmed, C Patch, D Bick, M Leblond… - Frontiers in …, 2022 - frontiersin.org
The transformative potential of whole genome sequencing (WGS) as a diagnostic tool in
healthcare has been demonstrated by initiatives including the 100,000 Genomes Project …
healthcare has been demonstrated by initiatives including the 100,000 Genomes Project …
Enabling responsible public genomics
JM Conley, AK Doerr, DB Vorhaus - Health Matrix, 2010 - HeinOnline
As scientific understandings of genetics advance, researchers require increasingly rich
datasets that combine genomic data from large numbers of individuals with medical and …
datasets that combine genomic data from large numbers of individuals with medical and …
Ethical endgames: broad consent for narrow interests; open consent for closed minds
JR Karlsen, JH Solbakk, S Holm - Cambridge Quarterly of Healthcare …, 2011 - cambridge.org
The ongoing legal and bioethics debates on consent requirements for collecting, storing,
and utilizing human biological material for purposes of basic and applied research—that is …
and utilizing human biological material for purposes of basic and applied research—that is …
Direct-to-consumer genetic testing: value and risk
MA Majumder, CJ Guerrini… - Annual Review of …, 2021 - annualreviews.org
Although the explosive growth of direct-to-consumer (DTC) genetic testing has moderated, a
substantial number of patients are choosing to undergo genetic testing outside the purview …
substantial number of patients are choosing to undergo genetic testing outside the purview …
[HTML][HTML] Retrospective access to data: the ENGAGE consent experience
AM Tassé, I Budin-Ljøsne, BM Knoppers… - European Journal of …, 2010 - nature.com
The rapid emergence of large-scale genetic databases raises issues at the nexus of medical
law and ethics, as well as the need, at both national and international levels, for an …
law and ethics, as well as the need, at both national and international levels, for an …