Frontiers in Genetics | ELSI in Science and Genetics

Original Research

Published on 19 Mar 2020

German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192)

in ELSI in Science and Genetics

Sabine Wöhlke
Manuel Schaper
Serena Oliveri
Ilaria Cutica
Francesca Spinella
Gabriella Pravettoni
Daniela Steinberger
Silke Schicktanz

Frontiers in Genetics

doi 10.3389/fgene.2020.00102

5,391 views
11 citations

Original Research

Published on 06 Mar 2020

Pioneering Informed Consent for Return of Research Results to Breast Cancer Patients Facing Barriers to Implementation of Genomic Medicine: The Kenyan BRCA1/2 Testing Experience Using Whole Exome Sequencing

in ELSI in Science and Genetics

Rispah Torrorey-Sawe
Nicole van der Merwe
Simeon Kipkoech Mining
Maritha J. Kotze

Frontiers in Genetics

doi 10.3389/fgene.2020.00170

7,873 views
16 citations

Methods

Published on 03 Mar 2020

Development of an Evidence-Based, Theory-Informed National Survey of Physician Preparedness for Genomic Medicine and Preferences for Genomics Continuing Education

in ELSI in Science and Genetics

Belinda J. McClaren
Emily A. King
Erin Crellin
Clara Gaff
Sylvia A. Metcalfe
Amy Nisselle

Frontiers in Genetics

doi 10.3389/fgene.2020.00059

10,993 views
35 citations

Original Research

Published on 03 Mar 2020

Preparing Medical Specialists for Genomic Medicine: Continuing Education Should Include Opportunities for Experiential Learning

in ELSI in Science and Genetics

Belinda J. McClaren
Erin Crellin
Monika Janinski
Amy E. Nisselle
Larissa Ng
Sylvia A. Metcalfe
Clara L. Gaff

Frontiers in Genetics

doi 10.3389/fgene.2020.00151

11,535 views
78 citations

Policy and Practice Reviews

Published on 20 Dec 2019

Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism

in ELSI in Science and Genetics

Andrea Martani
Lester Darryl Geneviève
Christiane Pauli-Magnus
Stuart McLennan
Bernice Simone Elger

Frontiers in Genetics

doi 10.3389/fgene.2019.01254

22,662 views
28 citations

Original Research

Published on 20 Dec 2019

The African Genomic Medicine Training Initiative (AGMT): Showcasing a Community and Framework Driven Genomic Medicine Training for Nurses in Africa

in ELSI in Science and Genetics

Victoria Nembaware
African Genomic Medicine Training Initiative
Nicola Mulder
Omar Abidi
MB Akanle
Stuart Alvaro Ali
Cliff Asher Aliga
Paballo Chauke
Minnet Cotzee
Collet Dandara

Frontiers in Genetics

doi 10.3389/fgene.2019.01209

17,821 views
42 citations

Brief Research Report

Published on 17 Dec 2019

Using the Findings of a National Survey to Inform the Work of England’s Genomics Education Programme

in ELSI in Science and Genetics

Siobhan Simpson
Anneke Seller
Michelle Bishop

Frontiers in Genetics

doi 10.3389/fgene.2019.01265

6,041 views
22 citations

Original Research

Published on 13 Dec 2019

Conversations Surrounding the Use of DNA Tests in the Family Reunification of Migrants Separated at the United States-Mexico Border in 2018

in ELSI in Science and Genetics

Jennifer K. Wagner
Diana Madden
Valedie Oray
Sara H. Katsanis

Frontiers in Genetics

doi 10.3389/fgene.2019.01232

14,735 views
11 citations

Original Research

Published on 21 Nov 2019

Informing Integration of Genomic Medicine Into Primary Care: An Assessment of Current Practice, Attitudes, and Desired Resources

in ELSI in Science and Genetics

June C. Carroll
Judith Allanson
Shawna Morrison
Fiona A. Miller
Brenda J. Wilson
Joanne A. Permaul
Deanna Telner

Frontiers in Genetics

doi 10.3389/fgene.2019.01189

9,543 views
71 citations

Brief Research Report

Published on 13 Nov 2019

Genomic Education at Scale: The Benefits of Massive Open Online Courses for the Healthcare Workforce

in ELSI in Science and Genetics

Michelle Bishop
Edward Miller
Amelia McPherson
Siobhan Simpson
Stuart Sutherland
Anneke Seller

Frontiers in Genetics

doi 10.3389/fgene.2019.01094

5,980 views
8 citations

Original Research

Published on 12 Nov 2019

Scoping the Scene: What Do Nurses, Midwives, and Allied Health Professionals Need and Want to Know About Genomics?

in ELSI in Science and Genetics

Mona Saleh
Romy Kerr
Kate Dunlop

Frontiers in Genetics

doi 10.3389/fgene.2019.01066

6,555 views
21 citations

Original Research

Published on 08 Nov 2019

Ensuring Best Practice in Genomic Education and Evaluation: A Program Logic Approach

in ELSI in Science and Genetics

Amy Nisselle
Melissa Martyn
Helen Jordan
Nadia Kaunein
Alison McEwen
Chirag Patel
Bronwyn Terrill
Michelle Bishop
Sylvia Metcalfe
Clara Gaff

Frontiers in Genetics

doi 10.3389/fgene.2019.01057

13,848 views
38 citations

Perspective

Published on 05 Nov 2019

DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals

in ELSI in Science and Genetics

Eman Ahmed
Mahsa Shabani

Frontiers in Genetics

doi 10.3389/fgene.2019.01107

16,989 views
39 citations

Original Research

Published on 29 Oct 2019

Genomic Information for Clinicians in the Electronic Health Record: Lessons Learned From the Clinical Genome Resource Project and the Electronic Medical Records and Genomics Network

in ELSI in Science and Genetics

Marc S. Williams
Casey Overby Taylor
Nephi A. Walton
Scott R. Goehringer
Samuel Aronson
Robert R. Freimuth
Luke V. Rasmussen
Eric S. Hall
Cynthia A. Prows
Wendy K. Chung

Frontiers in Genetics

doi 10.3389/fgene.2019.01059

13,361 views
57 citations

Original Research

Published on 10 Oct 2019

Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

in ELSI in Science and Genetics

Nchangwi Syntia Munung
Victoria Nembaware
Jantina de Vries
Daima Bukini
Furahini Tluway
Marsha Treadwell
Raphael Zozimus Sangeda
Gaston Mazandu
Mario Jonas
Vivian Paintsil

Frontiers in Genetics

doi 10.3389/fgene.2019.00943

7,432 views
26 citations

Systematic Review

Published on 10 Oct 2019

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

in ELSI in Science and Genetics

R. Brian Woodbury
Julie A. Beans
Vanessa Y. Hiratsuka
Wylie Burke

Frontiers in Genetics

doi 10.3389/fgene.2019.00942

8,220 views
16 citations

Opinion

Published on 08 Oct 2019

Strategies for Genomic Medicine Education in Low- and Middle-Income Countries

in ELSI in Science and Genetics

Nirmala D. Sirisena
Vajira H. W. Dissanayake

Frontiers in Genetics

doi 10.3389/fgene.2019.00944

4,412 views
18 citations

Mini Review

Published on 11 Sep 2019

Preparing Medical Specialists to Practice Genomic Medicine: Education an Essential Part of a Broader Strategy

in ELSI in Science and Genetics

Erin Crellin
Belinda McClaren
Amy Nisselle
Stephanie Best
Clara Gaff
Sylvia Metcalfe

Frontiers in Genetics

doi 10.3389/fgene.2019.00789

12,371 views
73 citations

Review

Published on 03 Sep 2019

Ethical Challenges of Germline Genetic Enhancement

in ELSI in Science and Genetics

Ignacio Macpherson
María Victoria Roqué
Ignacio Segarra

Frontiers in Genetics

doi 10.3389/fgene.2019.00767

67,228 views
11 citations

Mini Review

Published on 02 Aug 2019

Evidence-Based Genetic Education of Non-Genetic-Expert Physicians: Experiences Over Three Decades in Amsterdam

in ELSI in Science and Genetics

Martina C. Cornel

Frontiers in Genetics

doi 10.3389/fgene.2019.00712

4,612 views
17 citations

Policy and Practice Reviews

Published on 29 Jul 2019

Enabling Global Clinical Collaborations on Identifiable Patient Data: The Minerva Initiative

in ELSI in Science and Genetics

Christoffer Nellåker
Fowzan S. Alkuraya
Gareth Baynam
Raphael A. Bernier
Francois P.J. Bernier
Vanessa Boulanger
Michael Brudno
Han G. Brunner
Jill Clayton-Smith
Benjamin Cogné

Frontiers in Genetics

doi 10.3389/fgene.2019.00611

9,486 views
20 citations

Opinion

Published on 07 Jun 2019

Parental Selective Reproduction: Genome-Editing and Maternal Behavior as a Potential Concern

in ELSI in Science and Genetics

Andrea Lavazza

Frontiers in Genetics

doi 10.3389/fgene.2019.00532

66,613 views
6 citations

Original Research

Published on 26 Apr 2019

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

in ELSI in Science and Genetics

Sabine Wöhlke
Manuel Schaper
Silke Schicktanz

Frontiers in Genetics

doi 10.3389/fgene.2019.00380

9,323 views
29 citations

Policy and Practice Reviews

Published on 05 Apr 2019

A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research

in ELSI in Science and Genetics

Gratien Dalpé
Adrian Thorogood
Bartha Maria Knoppers

Frontiers in Genetics

doi 10.3389/fgene.2019.00289

7,559 views
23 citations

214 articles

articles

German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192)

Pioneering Informed Consent for Return of Research Results to Breast Cancer Patients Facing Barriers to Implementation of Genomic Medicine: The Kenyan BRCA1/2 Testing Experience Using Whole Exome Sequencing

Development of an Evidence-Based, Theory-Informed National Survey of Physician Preparedness for Genomic Medicine and Preferences for Genomics Continuing Education

Preparing Medical Specialists for Genomic Medicine: Continuing Education Should Include Opportunities for Experiential Learning

Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism

The African Genomic Medicine Training Initiative (AGMT): Showcasing a Community and Framework Driven Genomic Medicine Training for Nurses in Africa

Using the Findings of a National Survey to Inform the Work of England’s Genomics Education Programme

Conversations Surrounding the Use of DNA Tests in the Family Reunification of Migrants Separated at the United States-Mexico Border in 2018

Informing Integration of Genomic Medicine Into Primary Care: An Assessment of Current Practice, Attitudes, and Desired Resources

Genomic Education at Scale: The Benefits of Massive Open Online Courses for the Healthcare Workforce

Scoping the Scene: What Do Nurses, Midwives, and Allied Health Professionals Need and Want to Know About Genomics?

Ensuring Best Practice in Genomic Education and Evaluation: A Program Logic Approach

DNA Data Marketplace: An Analysis of the Ethical Concerns Regarding the Participation of the Individuals

Genomic Information for Clinicians in the Electronic Health Record: Lessons Learned From the Clinical Genome Resource Project and the Electronic Medical Records and Genomics Network

Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

Data Management in Health-Related Research Involving Indigenous Communities in the United States and Canada: A Scoping Review

Strategies for Genomic Medicine Education in Low- and Middle-Income Countries

Preparing Medical Specialists to Practice Genomic Medicine: Education an Essential Part of a Broader Strategy

Ethical Challenges of Germline Genetic Enhancement

Evidence-Based Genetic Education of Non-Genetic-Expert Physicians: Experiences Over Three Decades in Amsterdam

Enabling Global Clinical Collaborations on Identifiable Patient Data: The Minerva Initiative

Parental Selective Reproduction: Genome-Editing and Maternal Behavior as a Potential Concern

How Uncertainty Influences Lay People’s Attitudes and Risk Perceptions Concerning Predictive Genetic Testing and Risk Communication

A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research