Full Description
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.
Contents
Foreword
Preface
List of Contributors
Introduction
Edward S. Dove, Vasiliki Rahimzadeh, and Michael J. S. Beauvais
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
Timothy Caulfijield
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 Efffect
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
Jefffrey 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: Helping Us Bloom and Grow
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 Defijining 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:" International Human Rights Law as the Basis for the International Governance in the Biomedical Science
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 Stratifijication 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
