Promoting the “Human” in Law, Policy, and Medicine

Edward S. Dove is Professor of Law at Maynooth University and an Honorary Professor at the University of Edinburgh. Among other works, he is author of Regulatory Stewardship of Health Research: Navigating Participant Protection and Research Promotion (Edward Elgar, 2020). Vasiliki Rahimzadeh is Assistant Professor of medical ethics and health policy at Baylor College of Medicine in Houston, Texas. Her National Institutes of Health-funded research program focuses on the ethical, legal, and social issues of sharing genomic and related health data. Michael J. S. Beauvais is a doctoral candidate at the University of Toronto's Faculty of Law. He researches the privacy of young people. He is an affiliate of the Schwartz Reisman Institute for Technology and Society (Toronto) and the Information Law Institute (NYU).

Foreword

Preface

List of Contributors



1 DTC Pharmacogenetic Testing and Health Insurance: Good for Consumers, Good for Business?

 Maxwell Brodie and Yann Joly

Vignette: 25 Years of Enriching Collaboration with Bartha M. Knoppers

 Jacques Simard

Vignette: A Lifetime of Collaboration

 Denise Avard

2 If We Build It, They Will Come: Population Biobanks and the Enduring Legacy of Bartha Maria Knoppers

 Ma’n H. Zawati and Alycia Noë

Vignette: A Cameo on BMK

 Claude Laberge

Vignette: Nice and Smart

 Jennifer Stoddart

3 Anticipatory International Ethics

 Ruth Chadwick

Vignette: Vivid Memories with Bartha Knoppers

 Annelien Bredenoord

Vignette: A Tribute to Bartha Maria Knoppers: Dear Friend and Collaborator

 Mark A. Rothstein

4 Policymaking as a Humanistic Endeavour: On the Art and Science of Genomics Policy Development

 Eric M. Meslin and James V. Lavery

Vignette: Bartha Maria Knoppers: Accolades from the Antipodes

 Dianne Nicol and Don Chalmers

Vignette: Overheard BMK

 Tim Caulfield

5 Bioethics “Laws”: Paradox or Way of the Future?

 Emmanuelle Rial-Sebbag and Anne Cambon-Thomsen

Vignette: Bartha, Biobanking and Success

 Jane Kaye

Vignette: Thirty Years of Learning from Bartha

 Pilar Nicolás

6 Bartha Maria Knoppers: a Standard-Bearer for Responsible Genomic and Health Data Sharing

 Adrian Thorogood and Fruzsina Molnár-Gábor

Vignette: The Great BMK Effect

 Patricia Kosseim

Vignette: Bartha Knoppers—Colleague and Friend

 Martin Bobrow

7 The Sweet Smell of the Rose – Names, Categories, and the Authentic Meaning of Being Human

 R. Alta Charo

Vignette: Trademark Bartha

 Jeffrey Kahn

Vignette: The Magic Tin: Cookies, Policy, Ethics, and Mentorship

 Rosario Isasi

8 Population-Based Genome-Wide Testing in Babies: Newborn Screening or Mission Creep?

 Jan M. Friedman

Vignette: BMK’s Garden: Growing Where You Are Planted

 Nadine Thorsen

Vignette: Bartha and Me

 Rose-Marie Hozyan

9 A Human Rights Lens to Understanding the Concept of “Serious” Genetic Conditions

 Erika Kleiderman and Vardit Ravitsky

Vignette: Bartha M. Knoppers: Why Family Matters

 Trudo Lemmens

Vignette: The Light Shines Back on You: Protégés of Bartha M. Knoppers

 Judy Illes

10 Defining Best Interests: Challenges and Perspectives in Paediatric Ethics

 Pascal Borry

Vignette: Mentorship and Gratitude: a Thank You to Professor Knoppers

 Dimitri Patrinos

Vignette: Shining Bright: a Journey of Illumination, Influence and Inspiration

 Amalia M. Issa

11 “Beyond the Moral Appeals of Bioethics:”

 Andrea Boggio and Rumiana Yotova

Vignette: A Memorable and Enjoyable 20 Years

 Kazuto Kato

Vignette: Bartha Maria Knoppers: a Fantastic Woman!

 Michèle Stanton-Jean

12 Persons, Genomes and Populations

 Ron Zimmern

Vignette: Bartha, CGP, and the McGill Genome Centre

 Mark Lathrop

Vignette: Bartha’s Presence

 Ubaka Ogbogu

13 Human Diversity, Equity, and Bartha Maria Knoppers

 Henry T. Greely

Vignette: Human Dignity at the Crossroads of Law and Science

 Patrick A. Molinari

Vignette: A Tribute to Bartha

 Graeme Laurie

14 Families Through the Lens of Genomics: Obligation or Consideration?

 Ellen Wright Clayton

Vignette: Bartha: An Exemplary Academic

 David Townend

Vignette: Climbing Every Mountain: Bartha Maria’s Melody of Mentorship

 Nicole Palmour

15 Whither Consent in Clinical Genetics?

 Susan E. Wallace

Vignette: Bartha’s True Legacy

 Jasper A. Bovenberg

Vignette: Thoughts about Bartha and Her Work

 Eva Winkler

16 Securing the “Human” in the Generalization of Risk Stratification Algorithms through the Human Right to Science

 Calvin Wai-Loon Ho

Vignette: Positivity and Perseverance

 Alexander Bernier

Vignette: Bartha Maria Knoppers: A Game Changer

 Alexandra Obadia



Index