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).

• ForewordPrefaceList of ContributorsIntroductionEdward S. Dove, Vasiliki Rahimzadeh, and Michael J. S. Beauvais1 DTC Pharmacogenetic Testing and Health Insurance: Good for Consumers, Good for Business?Maxwell Brodie and Yann JolyVignette: 25 Years of Enriching Collaboration with Bartha M. KnoppersJacques SimardVignette: A Lifetime of CollaborationDenise Avard2 If We Build It, They Will Come: Population Biobanks and the Enduring Legacy of Bartha Maria KnoppersMa’n H. Zawati and Alycia NoëVignette: A Cameo on BMKClaude LabergeVignette: Nice and SmartJennifer Stoddart3 Anticipatory International EthicsRuth ChadwickVignette: Vivid Memories with Bartha KnoppersAnnelien BredenoordVignette: A Tribute to Bartha Maria Knoppers: Dear Friend and CollaboratorMark A. Rothstein4 Policymaking as a Humanistic Endeavour: On the Art and Science of Genomics Policy DevelopmentEric M. Meslin and James V. LaveryVignette: Bartha Maria Knoppers: Accolades from the AntipodesDianne Nicol and Don ChalmersVignette: Overheard BMKTimothy Caulfijield5 Bioethics “Laws”: Paradox or Way of the Future?Emmanuelle Rial-Sebbag and Anne Cambon-ThomsenVignette: Bartha, Biobanking, and SuccessJane KayeVignette: Thirty Years of Learning from BarthaPilar Nicolás6 Bartha Maria Knoppers: A Standard-Bearer for Responsible Genomic and Health Data SharingAdrian Thorogood and Fruzsina Molnár-GáborVignette: The Great BMK EfffectPatricia KosseimVignette: Bartha Knoppers—Colleague and FriendMartin Bobrow7 The Sweet Smell of the Rose—Names, Categories, and the Authentic Meaning of Being HumanR. Alta CharoVignette: Trademark BarthaJefffrey KahnVignette: The Magic Tin: Cookies, Policy, Ethics, and MentorshipRosario Isasi8 Population-Based Genome-Wide Testing in Babies: Newborn Screening or Mission Creep?Jan M. FriedmanVignette: BMK’s Garden: Helping Us Bloom and GrowNadine ThorsenVignette: Bartha and MeRose-Marie Hozyan9 A Human Rights Lens to Understanding the Concept of “Serious” Genetic ConditionsErika Kleiderman and Vardit RavitskyVignette: Bartha M. Knoppers: Why Family MattersTrudo LemmensVignette: The Light Shines Back on You: Protégés of Bartha M. KnoppersJudy Illes10 Defijining Best Interests: Challenges and Perspectives in Paediatric EthicsPascal BorryVignette: Mentorship and Gratitude: A Thank You to Professor KnoppersDimitri PatrinosVignette: Shining Bright: A Journey of Illumination, Influence, and InspirationAmalia M. Issa11 “Beyond the Moral Appeals of Bioethics:” International Human Rights Law as the Basis for the International Governance in the Biomedical ScienceAndrea Boggio and Rumiana YotovaVignette: A Memorable and Enjoyable 20 YearsKazuto KatoVignette: Bartha Maria Knoppers: A Fantastic Woman!Michèle Stanton-Jean12 Persons, Genomes, and PopulationsRon ZimmernVignette: Bartha, CGP, and the McGill Genome CentreMark LathropVignette: Bartha’s PresenceUbaka Ogbogu13 Human Diversity, Equity, and Bartha Maria KnoppersHenry T. GreelyVignette: Human Dignity at the Crossroads of Law and SciencePatrick A. MolinariVignette: A Tribute to BarthaGraeme Laurie14 Families through the Lens of Genomics: Obligation or Consideration?Ellen Wright ClaytonVignette: Bartha: An Exemplary AcademicDavid TownendVignette: Climbing Every Mountain: Bartha Maria’s Melody of MentorshipNicole Palmour15 Whither Consent in Clinical Genetics?Susan E. WallaceVignette: Bartha’s True LegacyJasper A. BovenbergVignette: Thoughts about Bartha and Her WorkEva Winkler16 Securing the “Human” in the Generalization of Risk Stratifijication Algorithms through the Human Right to ScienceCalvin Wai-Loon HoVignette: Positivity and PerseveranceAlexander BernierVignette: Bartha Maria Knoppers: A Game ChangerAlexandra ObadiaIndex