Promoting the "Human" in Law, Policy, and Medicine

Essays in Honour of Bartha Maria Knoppers
Erscheinungsjahr 2024
ISBN: 978-90-04-68853-7
Verlag: Brill

Buch, Englisch, Band 1, 368 Seiten, Format (B × H): 163 mm x 242 mm, Gewicht: 726 g

Reihe: Global Health, Human Rights and Social Justice

Professor Bartha Maria Knoppers stepped down from the Canada Research Chair in Law and Medicine at McGill University in April 2024, a post she held for more than 20 years. Professor Knoppers consistently prioritized “humanity” in her academic work and in policymaking. As such, she forged a strong intellectual legacy, notably through her work on the human right to science, genomic and health-related data sharing, genome editing, human reproductive technologies, stem cell research, the rights of children, and population health. This collection of essays honours her extraordinary academic contributions to law, policy, and medicine.

Autoren/Hrsg.

Weitere Mitwirkende

Dove, Edward S.

Rahimzadeh, Vasiliki

Beauvais, Michael J. S.

Fachgebiete

• Sozialwissenschaften Politikwissenschaft Politische Kultur Menschenrechte, Bürgerrechte
• Rechtswissenschaften Internationales Recht und Europarecht Internationales Recht Internationale Menschen- und Minderheitenrechte, Kinderrechte

Inhaltsverzeichnis

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

Über Autor(innen)

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).