Posts made in January, 2019

REPOST: Civil Society Statement to the Organizers of the Second International Summit on Human Genome Editing

Posted on Jan 23, 2019

This post originally appeared on the Center for Genetics and Society’s website on November 28, 2018.

To add your signature, please sign here or email your name and affiliation to info@geneticsandsociety.org .

The undersigned individuals and organizations wish to express our dismay and outrage at He Jiankui’s claims of creating genetically engineered babies. Though these claims are unverified, his actions violate a key provision of the concluding statement issued at the First International Summit on Human Gene Editing in 2015, that such dangerous experiments should not proceed until there was broad societal consensus in their favor. 

That statement was intended to reassure civil society that the scientific community could regulate itself and prevent such reckless behavior. If the organizers of this week’s summit in Hong Kong wish to demonstrate that science is not out of control, and is worthy of public trust, now is the time for them and the rest of the international scientific community to act.

We urge that they (1) condemn in clear terms the rogue actions of the researcher who has taken it on himself to make a hugely consequential decision that affects all of us; and (2) call on governments and the United Nations to establish enforceable moratoria prohibiting reproductive experiments with human genetic engineering.

Such policies are necessary in order to ensure that we do not get into a runaway international competition for primacy in reproductive genetic engineering, leading to a new form of eugenics.  If the summit and other scientific bodies do not act, it will fall to civil society and policy makers to do so, in order to ensure the avoidance of disastrous consequences for global society.

  • David King, Human Genetics Alert
  • Marcy Darnovsky, Center for Genetics and Society
  • Katie Hasson, Center for Genetics and Society

To add your signature, please sign here or email your name and affiliation toinfo@geneticsandsociety.org .

INDIVIDUAL SIGNATORIES (Affiliation for Identification Purposes Only)

  1. Elisabeth Abergel, PhD, Department of sociology, Université du Québec à Montréal (UQAM)
  2. Gen Acuna, Toronto Non-GMO Coalition; Kids Right To Know
  3. Roberto Andorno, PhD, University of Zurich, Switzerland
  4. George J. Annas, JD, MPH, Center for Health Law, Ethics & Human Rights, Boston University School of Public Health
  5. Dr. Michael Antoniou, King’s College London
  6. Lisa Archer, Friends of the Earth, US
  7. Simone Bateman, Emeritus Senior Researcher CNRS (Paris, France)
  8. Françoise Baylis, PhD, Dalhousie University, Halifax, Canada
  9. Claire Beaudevin, PhD, CNRS, Paris France
  10. Diane Beeson, PhD, Professor Emerita, CSU East Bay
  11. Emily Smith Beitiks, PhD, Associate Director, Paul K. Longmore Institute on Disability, San Francisco State University
  12. Kara Bensley, PhD, UC Berkeley School of Public Health
  13. Jennifer Berman Diaz, Founder, Toronto Non-GMO Coalition
  14. Rajani Bhatia, PhD, University at Albany
  15. Claire Bleakley, President, GE-free NZ in Food & Environment
  16. Catherine Bliss, PhD, UCSF Social Behavioral Sciences
  17. Lars Bolund, PhD, BGI/Lars Bolund Institute of Regenerative Medicine, Qingdao, China and Department of Biomedicine, Aarhus University, Denmark
  18. Catherine Bourgain, PhD, Sciences Citoyennes and Inserm Human Geneticist
  19. Paula Braveman, MD, MPH, University of California, San Francisco
  20. W. Malcolm Byrnes, PhD, Department of Biochemistry and Molecular Biology, Howard University College of Medicine, Washington, DC
  21. Erika M. Brown, MPH, UC Berkeley School of Public Health
  22. Alexander M. Capron, JD, University Professor and Professor of Law and Medicine, Keck School of Medicine, University of Southern California
  23. Alana Cattapan, PhD, Johnson Shoyama Graduate School of Public Policy, University of Saskatchewan
  24. Katayoun Chamany, PhD, Mohn Family Professor of Natural Sciences and Mathematics, Eugene Lang College at The New School
  25. Gail Chester, Breaking the Frame, London
  26. Daniel Cook, PhD, School of Community Health Sciences, University of Nevada Reno
  27. Marsha J. Tyson Darling, PhD, Professor & Director, Center for African, Black & Caribbean Studies, Adelphi University
  28. Katherine Weatherford Darling, PhD, Department of Social Science, University of Maine at Augusta
  29. Marcy Darnovsky, PhD, Center for Genetics and Society
  30. Roni Diamant-Wilson, PhD
  31. Donna Dickenson, PhD, Emeritus Professor of Medical Ethics and Humanities, University of London
  32. Ole Doering, PhD, Institute for Global Health, Berlin, Germany
  33. Katherine Drabiak, JD, Assistant Professor, College of Public Health, University of South Florida
  34. Elaine Draper, PhD, JD, Professor of Sociology and Director, Law and Society Program, California State University, Los Angeles
  35. Justine Durrell
  36. Irina Ermakova, Professor of Biology, Moscow, Russia
  37. George Estreich, Author
  38. Dr. Fleur Fisher, Former Head of Ethics, Science and Information at British Medical Association (1991-96)
  39. Kevin Fitzgerald, S.J., PhD, Creighton University School of Medicine
  40. Sarah Forthal, Columbia University
  41. Joan H. Fujimura, PhD, Martindale-Bascom Professor of Sociology, University of Wisconsin, Madison
  42. Katy Fulfer, PhD, Assistant Professor of Philosophy and Women’s Studies, University of Waterloo
  43. Alexander Gaguine, Appleton Foundation
  44. Ben Gaia, Dialatree New Zealand
  45. Emily Galpern, MPH, Public Health Consultant
  46. Rosemarie Garland-Thomson, PhD, Professor of English & bioethics, Founding Director, Disability Studies Initiative, Emory University
  47. Landon J. Getz, PhD Candidate, Dalhousie University
  48. Alan  Goodman, PhD, Professor of Biological Anthropology, Hampshire College
  49. Laurie Goodman, PhD, Editor-in-Chief GigaScience
  50. Samantha D. Gottlieb,  PhD, MHS, Medical Anthropologist
  51. Zelka Linda Grammer, GE Free Northland, Aotearoa/ NZ
  52. Rosann Greenspan, PhD, Executive Director, Center for the Study of Law and Society, University of California, Berkeley
  53. Jeremy Gruber, JD, Former President, Council for Responsible Genetics
  54. Hille Haker, PhD, Richard McCormick Endowed Chair of Ethics, Loyola University Chicago
  55. Jaydee Hanson, Policy Director for Human Genetics, International Center for Technology Assessment
  56. Janet A. Hart, MA, PhD, MCPHS University, Boston, Massachusetts
  57. Michael Harvey, DrPhH, Assistant Professor of Public Health, San Jose State University
  58. Katie Hasson, PhD, Center for Genetics and Society
  59. Richard Hayes, PhD, Executive Director emeritus, Center for Genetics and Society
  60. Alexandra Henrion Caude, PhD, Science-En Conscience and Inserm Human Geneticist
  61. Sabrina Hermosilla, PhD, Columbia University
  62. Elisabeth Hildt, PhD, Illinois Institute of Technology
  63. Craig Holdrege, PhD, Director and Senior Researcher, The Nature Institute of Ghent, NY
  64. Nina Holland, Corporate Europe Observatory
  65. Lisa C. Ikemoto, JD, UC Davis School of Law
  66. Patricia Jennings, PhD, Professor of Sociology, CSU East Bay
  67. Chris Kaposy, PhD, Associate Professor of Bioethics, Memorial University
  68. Trica Keaton, PhD, Dartmouth College
  69. David King, PhD, Human Genetics Alert
  70. Brewster Kneen, Economist and author
  71. Regine Kollek, Prof., Hamburg University
  72. Nancy Krieger, PhD, Harvard T.H. Chan School of Public Health
  73. Liz Kroboth, MPH, Lecturer, San Francisco State University
  74. Sharon Labchuk, Earth Action Canada
  75. Martine Lappé, PhD, Science, Technology, and Society Program, California Polytechnic State University, San Luis Obispo
  76. Heather Lee, No More GMOs Toronto
  77. Martha Livingston, PhD, Chair and Professor, Public Health, SUNY Old Westbury
  78. Leah Lowthorp, PhD, University of Oregon
  79. Calum MacKellar, PhD, Director of Research, Scottish Council on Human Bioethics
  80. Laura Mamo, PhD, Health Equity Institute Professor, San Francisco State University
  81. Rev. Bronica Martindale-Taylor, BA, Health Educator
  82. Becky A. McClain, Alliance for Humane Biotechnology
  83. Noémie Merleau-Ponty, Department of Sociology, University of Cambridge
  84. Miroslav  Mikolasik, Member of the European Parliament
  85. Jessica Milne, MPH, Research Foundation of CUNY
  86. Alexandra Minna Stern, PhD, University of Michigan
  87. Jon  Muller, Secretary, GE-free NZ in Food & Environment
  88. Stuart Newman, PhD, Professor of Cell Biology & Anatomy, New York Medical College
  89. Trang Quynh Nguyen, Assistant Scientist, Department of Mental Health, Johns Hopkins Bloomberg School of Public Health
  90. Judy Norsigian, Co-founder and Board chair, Our Bodies Ourselves
  91. Osagie K. Obasogie, PhD, JD, Haas Distinguished Chair and Professor of Bioethics, UC Berkeley Joint Medical Program, School of Public Health
  92. Archana Pandya, OpenGlobalRights
  93. Brendan Parent, JD, Director of Applied Bioethics, New York University
  94. Stuart Parkinson, Dr, Scientists for Global Responsibility, UK
  95. Elena Pasca, Philosopher, Editor of Pharmacritique, Founder of the AVEAG Victim Association, France
  96. Helena Paul, Co-Director, EcoNexus
  97. Hervé Perdry, PhD, Human Geneticist, Université Paris-Sud
  98. Beth N. Peshkin, MS, LCGC, Pellegrino Center for Clinical Bioethics at Georgetown University, Washington, D.C.
  99. David Petrasek, PhD, Associate Professor, Graduate School of Public and International Affairs, University of Ottawa
  100. Angel Petropanagos, PhD, Quality Improvement Ethicist, William Osler Health System
  101. Bob Phelps, Executive Director, Gene Ethics, Australia
  102. Catherine Powell, Alliance for Humane Biotechnology
  103. Carolyn D.  Prouty, DVM, Faculty, Public Health and Health Sciences, The Evergreen State College
  104. Rhadika Rao, JD, Professor of Law and Harry & Lillian Hastings Research Chair, University of California, Hastings College of Law, San Francisco, California
  105. Elizabeth Reis, PhD, Macaulay Honors College, CUNY
  106. Claire  Robinson, Editor, GMWatch
  107. Ann Rojas-Cheatham
  108. Hilary Rose, PhD, Professor Emerita of Social Policy, University of Bradford
  109. Lisa Rubin, PhD, New School for Social Research
  110. Jade S. Sasser, PhD, University of California, Riverside
  111. Marsha Saxton, PhD, Director of Research, World Institute on Disability;  Lecturer, Disability Studies Program, UC Berkeley
  112. Pete  Shanks, Author
  113. Tom Sheahen, PhD, Director of the Institute for Theological Encounter with Science and Technology
  114. Stephen Shmanske, PhD, Emeritus Professor of Economics, California State University, East Bay
  115. MaryAnn Sorensen Allacci, PhD, Projects for Environmental Health, Knowledge, & Action, Inc.
  116. Malcolm Steinberg
  117. Tina Stevens, PhD, Alliance for Humane Biotechnology
  118. Alexander Stingl, Collège d’études mondiales
  119. Yeyang Su, a concerned member of our shared humanity
  120. Sun Wenyu, MD, Wuhan Institute of Virology, CAS
  121. José A. Tapia, MD, MPH, PhD(Econ), Associate Professor, Department of Politics, Drexel University
  122. Peter Taylor, PhD, Director, Science in a Changing World graduate track, University of Massachusetts at Boston
  123. Jacques Testart, Biologist, Honorary Senior Researcher Inserm (Paris, France)
  124. Jim Thomas, ETC Group
  125. Sheila R. Tully, PhD, Department of Anthropology, San Francisco State University
  126. France Winddance Twine, PhD, Professor of Sociology, University of California, Santa Barbara
  127. Mary Anne Urlakis, MA, PhD, Executive Director & Co-Founder, Donum Vitae Institute
  128. Britta van Beers, VU University Amsterdam Law School
  129. Ernst Ulrich von Weizsäcker, PhD, Honorary President, The Club of Rome and Past Co-Chair, International Resource Panel, UNEP
  130. Gabriele Werner-Felmayer, PhD, Medical University Innsbruck, Austria
  131. Alice Wong, Founder and Director, Disability Visibility Project
  132. Britt Wray, PhD
  133. Alicia Ely Yamin, JD, MPH, Georgetown University Law Center and Harvard TH Chan School of Public Health
  134. Weilan Ye, PhD, Head of the Vascular Biology Program, Molecular Oncology Division, Genentech Inc.
  135. Silvia Yee, Disability Rights Education and Defense Fund (DREDF)
  136. Luming Zhou, PhD, Department of Pathology, University of Utah

Individual Signatures Received after December 1, 2018

  1. Haiming Chen, PhD, Director of the Center for Global Governance and Law, Xiamen University of Technology, China
  2. Boris Pinto, Bosque University
  3. Lilia Wang, A Caring Global Citizen
  4. Qing Huang, Ms
  5. Suman Sahai, Uttaranchal
  6. Margarida Silva, Portuguese Catholic University
  7. Kaliris Salas-Ramirez, CUNY School of Medicine
  8. Katie Stoll, Genetic Support Foundation, Washington
  9. Ana Perincic
  10. Mahendra Singh, PhD, Freelance Science communicator (www.mahendrasingh.co), India
  11. Ruha Benjamin, PhD, Associate Professor of African American Studies, Princeton University
  12. Jo Ann Egan
  13. Mylene Botbol Baum, PhD, UCLouvain

ORGANIZATIONS

  1. Canadian Friends Service Committee (Quakers)
  2. Center for Genetics and Society
  3. Earth Action Canada
  4. FOODwatch Western Australia
  5. Friends of the Earth, Australia
  6. Friends of the Earth, US
  7. GE Free Northland, Aotearoa/NZ
  8. GE-free NZ in Food & Environment
  9. Genetic Support Foundation
  10. GM Watch
  11. Human Genetics Alert
  12. Sciences Citoyennes
  13. Scientists for Global Responsibility, UK
  14. Vigilance OGM, Canada
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Toxic Breastmilk: When Substance Abuse Relapse Means Death for Baby

Posted on Jan 23, 2019

This post originally appeared on the Harvard Law Bill of Health on November 15, 2018.http://blog.petrieflom.law.harvard.edu/2018/11/15/toxic-breastmilk-when-substance-abuse-relapse-means-death-for-baby/

Recently, a nursing mother in Pennsylvania made national headlines when her infant died from ingesting a combination of fatal drugs through breastmilk.  According to the coroner’s report, the infant died from a combination of methadone, methamphetamine, and amphetamine toxicity. The Bucks County District Attorney charged the mother, Samantha Jones, who also has a two-year old child, with criminal homicide. According to published reports, Jones was undergoing Medication Assisted Treatment (MAT) and receiving doses of methadone to treat her addiction to opioid painkillers.

Multiple commentators swiftly voiced opposition to the District Attorney, decrying the criminal charges against Jones, arguing it is “highly problematic” to levy criminal charges against a person undergoing treatment for Substance Use Disorder.

This case represents broader questions woven in the current opioid crisis: Is the criminal justice system merely punishing people for addiction? Who should be held accountable for such tragic outcomes against the most vulnerable members of society – infants and children? Do persons with addiction retain any choice over their actions? And lastly, what is the significance that Jones continued to engage in polysubstance abuse despite receiving Medication Assisted Treatment?  To note, the American College of Obstetricians and Gynecologists adopt the position that new mothers with Opioid Use Disorder who are engaged in MAT and wish to breastfeed can do so as long as they do not relapse.

Earlier this year, the Massachusetts Supreme Court in Eldred v. Massachusettsemphasized the criminal justice system does not punish persons with SUD for their addiction or relapse, but instead for involvement with a specific crime that directly impacts the safety and welfare of society, which may be motivated or influenced by drug abuse.  In Jones’s case, her relapse and decision to breastfeed her infant delivered a lethal dose of controlled substances into his system, resulting in his death. For others with opioid addiction this could include a variety of potential crimes, such as diversion and sale of opioid medications (including prescribed opioid medications used in MAT, like methadone or buprenorphine), fatal motor vehicle accidents caused by driver impairment, or child neglect by persons struggling with opioid addiction. Damage caused by these crimes and the consequences of drug abuse reverberate significant harm to other people society that is not diminished simply because the person committing the crime was impaired by the influence of drugs.

We have an ethical responsibility to use the law to protect the public’s safety and welfare while also considering whether our current treatment model offers appropriate care and compassion to persons with addiction. From a health law and ethics standpoint, this requires examining whether the scientific and medical evidence matches policy recommendations.

Media coverage of high profile cases, such as the Samantha Jones case and Eldred v. Massachusetts highlight fissures in the dominant model for treating persons with Opioid Use Disorder.  What’s troubling is that Jones did reach out for treatment. How could such an outcome happen? Growing evidencesuggests that our current approach is not working: many people who are funneled into MAT and taking methadone and buprenorphine are not recovering.

Policy rhetoric classifying addiction as a chronic brain disease minimizes psychological and social factors that contribute to addiction, marginalizing the importance of addressing personal circumstances and reasons for drug use. People with addiction can engage in self-reflection, retain free will, and can relearn mechanisms to respond to triggers of drug use.  Telling people with addiction that they have a chronic brain disease and will face a lifetime of struggle and relapse is not only unsupported by current evidence finding that most people with addiction recover without treatment, but it may also contribute to helplessness and despair.  Even if drug abuse induces changes in the brain that can erode self-control, these changes are not permanent.  Neuroscience shows abstinence not only reverses damage from substance abuse, but produces new learning and growth in the brain.

The National Institute of Drug Abuse and the Office of National Drug Control Policy tell us that MAT constitutes the most effective form of treatment, arguing it is misconception that such treatment substitutes one substance use disorder for another.  Few have questioned this assertion, but we should.  Even if MAT may indeed work for some, we need to ask the critical questions of why numerous patients receiving a replacement opioid become desperatefor higher doses, report seeking , and the majority continue to abuse opioidsand other substances such as alcohol, cocaine and cannabis.

Across the country, research and media reports show us glimpses of a larger problem: people are receiving a replacement opioid, but are still engaged in substance abuse and not receiving comprehensive treatment. In an Alabama case, Taylor v. Smith, the judge aptly summarized that the treatment facility provided methadone to the patient “not in lieu of illegal drugs, but in additionto them.” Patients who experience side effects like depression, fatigue, memory loss, and cognitive impairment may attempt to stop medication, only to encounter painful withdrawal and no clear plan from their treatment provider to address their dependence on a new powerful drug. Being impaired not only affects the patient’s ability to work, engage in family activities, and recover, but also impacts public safety and welfare.

This care is neither compassionate nor humane, and both patients and society deserve better. This unspeakable tragedy shattered a family, and it is incumbent upon us to ask the tough questions. Instead of merely calling for more access to treatment, we need to scrutinize what constitutes effective treatment and positive outcomes: being enrolled in MAT or merely reducing polysubstance abuse cruelly demonstrated the insufficiency of these criteria.

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