News, Resources, and Events Tagged "Genetics"
Regulating Direct-to-Consumer Polygenic Risk Scores
Recently, polygenic risk scores (PGSs)—genome-wide measures of individuals’ genetic propensities—have come to consumers. PGSs are now directly available to individuals to assess type 2 diabetes risk,…
Order now! COVID-19 and the Law: Disruption, Impact and Legacy
This edited volume is based on the Petrie-Flom Center’s 2021 annual conference, which, in partnership with the Solomon Center for Health Law and Policy at Yale Law School,…
Artificial Intelligence in Mental Health: Strategies for avoiding potential data harms
Event Description Applications of algorithmic and data-driven technologies in mental health care settings are rapidly expanding. While well-designed digital technologies may be used to promote effective…
Video now available! Achieving Telehealth’s Potential: The State Policy Landscape for Interstate Telehealth Practices
Event Description Telehealth has been an invaluable tool for preserving health care access during the pandemic. Early in the pandemic, policymakers on the federal and state level moved with remarkable…
Video now available! Achieving Telehealth’s Potential: The Federal Policy Landscape for Interstate Telehealth Practices
Event Description Telehealth has been an invaluable tool for preserving health care access during the pandemic. Early in the pandemic, policymakers on the federal and state level moved with remarkable…
Video now available! Achieving Telehealth’s Potential: The Policy Landscape’s Impact on Specialty Care
Event Description Telehealth has been an invaluable tool for preserving health care access during the pandemic. Early in the pandemic, policymakers on the federal and state level moved with remarkable…
Video now available! Climate Change and Health: A Health Policy and Bioethics Consortium
Event Description As one of the largest economic sectors globally, health care represents nearly 10% of GDP spending across O.E.C.D. countries. This significant activity produces an estimated 5-10%…
Video now available! What Magic Can Teach Us About Misinformation
Event Description This panel joined together the fields of medicine, magic, and ethics. We explored how misinformation and disinformation about health is created and spread, and how expectation violation…
Buffalo shooting ignites a debate over the role of genetics researchers in white supremacist ideology
The 18-year-old gunman suspected of carrying out a racist attack that killed 10 and injured three people in Buffalo, N.Y., last weekend left no questions about why he drove 200 miles…
Order now! The Future of Medical Device Regulation: Innovation and Protection
This edited volume is based on the Petrie-Flom Center’s 2020 annual conference, which brought together leading experts to explore the challenges medical device regulation might face …
Supplying International Aid Effectively: Ethics and Law
Confronting pandemics and improving health in low-income countries requires ambitious public health plans. Global health responses to HIV/AIDS and multidrug resistant tuberculosis can provide guidance on how to garner…
Video now available! Should Alexa Diagnose Alzheimer’s?: A Health Policy and Bioethics Consortium
View the conversation on Twitter @PetrieFlom using #DiagnosingAtHome. Check out the event coverage: Paul E. Alexis and Krishi Kishore, "Bioethics Panel Discusses Smart Device Disease Diagnosis," The Harvard Crimson (February 14, 2022) …
Video now available! Challenges for Mobile Diagnostics: Mobile MRI as a Case Study
Watch the fully captioned event recording. View the conversation on Twitter @PetrieFlom using #PrivateMRIs. Event Description Developed in the 1970s and commercialized shortly thereafter, Magnetic Resonance Imaging (MRI) has since…
Video now available! SCOTUS Revisits Abortion: Legal Strategies in Dobbs Oral Arguments
Watch the fully captioned event recording. View the conversation on Twitter @PetrieFlom using #Dobbs. Event Description On December 1, the U.S. Supreme Court heard oral argument in Dobbs v. Jackson…
Video now available! The Future of Abortion in America: A Virtual Townhall Discussion for Students
View the conversation @PetrieFlom using #AbortionTownhall. View the fully captioned event video. Event Description The future of abortion access in America is not secure, as recent developments have shown. In…
SYMPOSIUM SPEAKER SERIES: International Pandemic Lawmaking: Can a 'Pandemic Treaty' Promote Global Health Justice?
In light of the COVID-19 pandemic, this panel discussion was held virtually, as an online webinar. Event Description Amid contention that global governance was unprepared and incapacitated in its response…
Video now available! Book Launch: Consumer Genetic Technologies: Ethical and Legal Considerations
View the conversation at @PetrieFlom using #ConsumerGenetics. We will share the fully captioned event recording within 1-2 weeks. Event Description In September 2021, Cambridge University Press published Consumer Genetic Technologies: Ethical…
Video now available! Book Talk: The Genome Defense: Inside the Epic Legal Battle to Determine Who Owns Your DNA
View the conversation on Twitter @PetrieFlom using #GenomeDefense. Watch the fully captioned event video. Event Description When Chris Hansen, an ACLU lawyer, learned that the U.S. government was issuing…
SYMPOSIUM SPEAKER SERIES: International Pandemic Lawmaking: Addressing Scientific Innovation through Pandemic Lawmaking
Event Description Amid contention that global governance was unprepared and incapacitated in its response to the COVID-19 pandemic, this November, a special session of the World Health Assembly will convene…
Video now available! Book Talk: The Seven Sins of Memory Updated Edition: How the Mind Forgets and Remembers
View the conversation on Twitter @PetrieFlom using #sevensinsmemory. Watch the fully captioned event video. Read the event coverage. Colleen Walsh, "Are Google and smartphones degrading our memories?" The Harvard Gazette …
Video now available! Health Justice: Engaging Critical Perspectives in Health Law and Policy
View the conversation on Twitter at @PetrieFlom using #HealthJustice. Watch the fully captioned event video. Event Description What does health justice mean? How does health justice relate to other frameworks…
Mitochondrial disease: Replace or edit?
Maternal transmission of a wide spectrum of mutant alleles of mitochondrial DNA (mtDNA) gives rise to metabolic diseases of differing penetrance, presentation, and prognosis to offspring. Only a proportion of…
Governance Choices of Genome Editing Patents
There are a variety of governance mechanisms concerning the ownership and use of patents. These include government licenses, compulsory licenses, march-in rights for inventions created with federal funding, government use…
Problems with Using Polygenic Scores to Select Embryos
Complete author list: Patrick Turley, Michelle N. Meyer (Former Academic Fellow), Nancy Wang, David Cesarini, Evelynn Hammonds, Alicia R. Martin, Benjamin M. Neale, Heidi L. Rehm, Louise Wilkins-Haug, Daniel J.…
Genomic medicine and the “loss of chance” medical malpractice doctrine
As genomic medicine expands, interest in how medical malpractice law will apply to such questions as whether and when to return new or updated genomic results has grown. Given that…
Gene-Based Embryo Selection: Are 'Designer Babies' on the Horizon?
THURSDAY, July 1, 2021 (HealthDay News) -- The notion of parents picking out genetically perfect babies may seem like science fiction. But in a new report, a multidisciplinary group of researchers warn…
Researchers raise concerns about using genetic risk scores to pick ‘healthier’ embryos
As more people turn to in vitro fertilization for help with conceiving, a host of companies is capitalizing on the opportunity by offering screening services that allow hopeful parents to…
Order now! Consumer Genetic Technologies: Ethical and Legal Considerations
This edited volume is based on the Petrie-Flom Center’s 2019 annual conference, which brought together leading experts to explore what ethical and regulatory safeguards should be implemented and discuss the…
5 burning questions on the business of big genetics based on 23andMe’s filing to go public
It seemed a foregone conclusion: Despite the early popularity of companies offering health and ancestry insights for the cost of roughly $200 — and the brief but awkward experience of spitting…
Privacy Problems in the Genetic Testing Industry
Twenty years ago, health care providers conducted genetic testing for therapeutic purposes. Now, the public has access to direct-to-consumer (DTC) genetic testing that can help determine both health and non-health-related…
Genomics: Rewriting Our Health
Recombinant DNA. The double helix. Mapping the human genome. You know these are all related to our genes, but you might now know how, or what connects them. In this…
FDA gene therapy holdups suggest closer scrutiny by agency
The Food and Drug Administration cleared the first two gene therapies for inherited diseases in short order, with just a year and a half separating historic approvals for the blindness…
Rogues and enforcers: Reactions to the National Academies/Royal Society Report on Heritable Human Genome Editing
The HHGE report relies, in substantial part, on using law as an instrument of international governance of heritable genome editing. Although this is understandable, actually enforcing such a system&mdash…
Congress Needs To Decide If Gene Editing Is Permissible For Sperm And Eggs
In a recent article in The Journal of Law, Medicine, and Ethics, Professor I. Glenn Cohen of Harvard Law School, Professor Jacob Sherkow of the University of Illinois Urbana-Champaign, and…
Congress must clarify limits of gene-editing technologies
Genome editing of human embryos represents one of the most contentious potential scientific applications today. But what if geneticists could sidestep the controversy by editing sperm and eggs instead? According…
Gene Editing Sperm and Eggs (not Embryos): Does it Make a Legal or Ethical Difference?
Heritable, human genome editing constitutes one of the most contentious issues facing science policy. This was starkly illustrated by Dr. He’s unsafe, unethical, and irresponsible editing of twin…
Challenging Patents To Promote Timely Generic Drug Entry: The Second Look Act And Other Options
Tackling prescription drug costs remains a top priority for voters. Drug spending in the US is driven both by increasing overall prescription volumes and by high prices for brand-name drugs,…
Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action
Complete contributor list: National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Addressing Sickle Cell Disease: A Strategic…
Patent board delivers blow to University of California over its CRISPR invention claims
Making a key ruling in a long-running battle over lucrative patent rights, a government patent board has knocked down the University of California’s initial claims that its scientists…
The latest round in the CRISPR patent battle has an apparent victor, but the fight continues
The long-running patent battle over CRISPR, the genome editor that may bring a Nobel Prize and many millions of dollars to whoever is credited with its invention, has taken a…
Unnecessary and Redundant? Evaluating Canada’s Genetic Non-Discrimination Act, 2017
In 2017, Canada’s Genetic Non-Discrimination Act (GNDA) came into force. The GNDA’s enactment was prompted by concerns about genetic discrimination given the growing amount of genetic data…
Comparing Onset of Biosimilar Versus Generic Competition in the United States
We sought to compare expected and observed biosimilar and generic entry dates among new drugs approved by the US Food and Drug Administration (FDA) between 2000 and 2012. We defined expected biosimilar…
Response to Charles Murray on Polygenic Scores
The following is from the full version of the Letter to the Editor of the Wall Street Journal in response to Charles Murray’s op-ed, “Genetics Will Revolutionize…
Eighth Annual Health Law Year in P/Review
At the Petrie-Flom Center's eighth annual Health Law Year in P/Review, leading experts discussed major developments in health law and policy during 2019 and what to watch out for…
Huntington’s disease: Woman who inherited gene sues NHS
A woman who was not informed that her father had a fatal, inherited brain disorder has told the High Court that she would have had an abortion if she'd…
Biomarkers in Cancer Drug Approvals: New Opportunities and Challenges: A Health Policy and Bioethics Consortium
The FDA recently approved Keytruda and Vitrakvi, two cancer drugs targeting biomarkers without reference to the site of the disease. Defining cancer in terms of biomarkers alone may require us…
Health Law Workshop: Jacob S. Sherkow: Adaptive Intellectual Property
Presentation This presentation is not available for download. About the Presenter Jacob S. Sherkow is the 2019-2020 Edmond J. Safra Center and Petrie-Flom Center Fellow in Ethics of Technological and…
Book Talk: Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law
Couldn't join us for the book talk? Check out some of the speakers' slide presentations and blog posts! Description Millions of Americans rely on the likes of birth control,…
Genetic testing, insurance discrimination and medical research: what the United States can learn from peer countries
From the abstract: While genetic testing may be the gateway to the future of medicine, it also poses challenges for individuals, especially in terms of differentiated treatments on the basis…
Patent Eligibility Reform and Public Health
From the article: The 2013 Decision by the Supreme Court of the United States in Association for Molecular Pathology v. Myriad Genetics, Inc. was seen by many as a triumph for…
A Question of Prevention: I. Glenn Cohen on a procedure to avoid passing on genetic mutations, and the push to legalize it
From the article: Calls are growing for the U.S. to lift a ban on mitochondrial replacement therapy, or MRT, a procedure developed to enable women who are at risk…
Why Democrats reopened the debate about germline gene editing
From the article: Research advocates say there’s a way for Congress to roll back the ban on MRT without opening the door to other types of heritable gene…
Learn Your Genetic Privacy Workers’ Rights
From the article: Ten years ago, the novelty of tracking down lost cousins and tracing ethnic origins made DNA kits seem like benign tools for amateur genealogists. Today, with DNA…
Heritable Genome Editing: Is a Moratorium Needed
From the article: Prompted by the reported birth of twins whose embryonic genomes may have been edited, an international group of 18 distinguished scientists and ethicists recently called for a voluntary…
Information Avoidance in Genetic Health: Perceptions, Norms, and Preferences
From the abstract: The decision to avoid or ignore potentially useful information is common and often costly in health and genetics. Little is known, however, about how people evaluate those…
No one can be truly anonymous ever again thanks to genetic sequencing
This article is behind a paywall. Harvard affiliates can access the full text via Hollis. A battle between billionaires over the control of country club tennis courts six years ago…
The Second Reproductive Revolution: Glenn Cohen delivers chair lecture
From the article: Technology is changing reproduction, says Professor I. Glenn Cohen ’03, one of the world’s leading experts on the intersection of bioethics and the law. In…
2019 Petrie-Flom Center Annual Conference: Consuming Genetics: Ethical and Legal Considerations of New Technologies
Couldn't join us for the conference? Join the conversation on Twitter with #DTCgenome! And check out many of our speakers' slide presentations and our "Consuming Genetics" blog symposium! The…
I. Glenn Cohen Chair Lecture - The Second Reproductive Revolution: From Gene Editing, to Uterus Transplants, to Embryos Derived from Our Skin – How Technology Is Changing Reproduction
Dean John F. Manning honored I. Glenn Cohen on the occasion of his appointment as the James A. Attwood and Leslie Williams Professor of Law Professor Cohen, who is also…
Gene Editing of Babies and Universal Human Rights: Hot Topics in Health Law
At this event, Professor George Annas, beloved health law professor at Boston University, discussed gene editing of babies and the idea of health care as a human right. The event…
Mitochondrial Replacement Therapy: Considering the Future of U.S. Policy on "Three-Parent IVF"
Couldn't join us? Check out the conversation on Twitter: @PetrieFlom #MRTpanel and some of our speakers' slide presentations below! Learn more about the issues! Check out media coverage supporting…
Genome Editing: Rights and Wrongs: A Health Policy and Bioethics Consortium
Gene-editing technologies offer substantial promise in treating disease, but their use raises important ethical and public health questions about how these innovations should be applied and regulated. Different groups have…
Black-Box Medicine: Legal and Ethical Issues: A Health Policy and Bioethics Consortium
Couldn't join us for the event? Check out some of the panelists' slide presentations below! Description Black-box medicine—the use of opaque computational models to make care decisions…
The Lumbering Crawl Toward Human Germline Editing
From the article: It is in the nature of novelty that consensus is hard to come by. Such is clearly the lot of groundbreaking biomedical advances. History is no stranger…
When is a Medical Treatment Worth $850,000? The Value of Luxturna and Gene Therapy Treatments: A Health Policy and Bioethics Consortium
Luxturna, a gene therapy treatment for a rare form of inherited blindness, was recently approved and administered for the first time to a patient at Massachusetts Eye and Ear in…
Seventh Annual Health Law Year in P/Review
Description At the Seventh Annual Health Law Year in P/Review symposium, leading experts discussed major developments during 2018 and what to watch out for in 2019. Speakers covered hot topics including…
The Ethics of Heritable Genome Editing: New Considerations in a Controversial Area
From the article: Editing the genome of human gametes or embryos is a disruptive unactualized technology and continues to be the subject of a wide range of concerns. The chief…
Health Law Workshop: Anya Prince
Presentation Topic: "Gene Therapy's Field of Dreams: If You Build It, Will We Pay?" This paper is not available for download. To request a copy in preparation for the…
Call for Applications: ELSI Post-Doctoral Researcher, The Columbia University Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics and The Hastings Center
From the call: The Columbia University Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics(a National Institutes of Health-funded Center of Excellence…
The Petrie-Flom Center and Edmond J. Safra Center for Ethics Fellow-in-Residence, Petrie-Flom Center, Harvard Law School, and Edmond J. Safra Center, Harvard University
Each year the Edmond J. Safra Center for Ethics at Harvard University hosts several fellows-in-residence. For 2019-20, they are concentrating their fellowships on the Ethics of Technological…
Petrie-Flom Center and Edmond J. Safra Center for Ethics Fellow-in-Residence: The Ethics of Technological and Biomedical Innovation
Each year the Edmond J. Safra Center for Ethics at Harvard University hosts several fellows-in-residence. For 2019-20, they are concentrating their fellowships on the Ethics of Technological and Biomedical Innovation. …
Call for Abstracts: 2019 Petrie-Flom Center Annual Conference: Consuming Genetics, Petrie-Flom Center, Harvard Law School
The call for abstracts for the 2019 annual conference is now closed. The conference agenda will be posted in late fall 2018 to the conference website. May 17, 2019 The Petrie-Flom Center for Health…
Petrie-Flom Welcomes New Precision Medicine Fellow!
We are excited to announce that Sara Gerke is joining the Petrie-Flom Center's Project on Precision Medicine, Artificial Intelligence, and Law (PMAIL) as our Precision Medicine Fellow. As the…
Call for Papers: New Opportunities and Risks of the Genomic Era, Ewha University in Seoul, South Korea
CALL FOR PAPERS EIBLE 2018 ANNUAL CONFERENCE New Opportunities and Risks of the Genomic Era [Friday, December 14, 2018] Ewha Womans University Seoul, South Korea CONFERENCE DESCRIPTION The Ewha Institute for Biomedical Law …
Building Capacity for a Global Genome Editing Observatory: Institutional Design
Complete author list: Krishanu Saha, J. Benjamin Hurlbut, Sheila Jasanoff, Aziza Ahmed, Anthony Appiah, Elizabeth Bartholet, Françoise Baylis, Gaymon Bennett, George Church, I. Glenn Cohen, George Daley, Kevin…
The Networking Exchange at the Broad Institute
Description The Networking Exchange showcased life science technologies developed at universities, research institutions, and hospitals of Massachusetts. The event provided a range of opportunities to engage with Massachusetts technology licensing…
Call for Abstracts: 2018 PQG Conference, The Program in Quantitative Genomics, Harvard T.H. Chan School of Public Health
General Description The conference schedule includes time for scientific presentations, as well as a poster session for submitted abstracts. Three abstracts will be selected for Stellar Abstract Awards and…
Circumvention Medical Tourism and Cutting Edge Medicine: The Case of Mitochondrial Replacement Therapy
From the article: “Medical Tourism” is the travel of patients from a home country to a destination country for the primary purpose of receiving health care. “Circumvention…
Authorities Use DNA Testing Service to Identify “Golden State Killer” - What Does This Mean for You?
From the article: Late last month, authorities charged a man in Sacramento County, California as the so-called Golden State Killer after tracking him down with a private DNA test company,…
Valuations of Life: Birth defects, prenatal diagnoses, and disability, Uppsala University, Sweden
General Description: Definitions of what counts as a valuable life implicitly and explicitly saturate both historical and contemporary narratives about birth defects, prenatal diagnoses, and disability. The aim of this…
Preventing Mitochondrial Diseases: Embryo-Sparing Donor-Independent Options
Abstract Mutant mitochondrial DNA gives rise to a broad range of incurable inborn maladies. Prevention may now be possible by replacing the mutation-carrying mitochondria of zygotes or oocytes at risk…
Harvard Medical School Annual Bioethics Conference 2018: Defining Death: Organ Transplantation and the 50-Year Legacy of the Harvard Report on Brain Death
The 2018 Annual Bioethics Conference explored the legacy of the 1968 report from the Harvard Medical School committee that proposed the concept of “brain death” as a new criterion for…
Preventing Mitochondrial Disease: A Path Forward
Abstract: In a possible first, the heritable transmission of a fatal mitochondrial DNA disease (Leigh syndrome) may have been prevented by replacing the mutation-bearing mitochondria of oocytes with donated mutation-free…
Petrie-Flom Center launches Project on Precision Medicine, Artificial Intelligence, and the Law
The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School and the Center for Advanced Studies in Biomedical Innovation Law (CeBIL) at the University of Copenhagen…
The Petrie-Flom Center Launches New Project: Precision Medicine, Artificial Intelligence, and the Law (PMAIL)
The Project on Precision Medicine, Artificial Intelligence, and the Law will seek to better understand the frontiers of big data in health care diagnostics, through interdisciplinary analysis of important health…
Sixth Annual Health Law Year in P/Review
Couldn't join us? Check out the conversation on Twitter: @PetrieFlom #healthlawpreview2018 and some of our speakers' slide presentations below! Description The Sixth Annual Health Law Year in P/Review…
Big Data, Health Law, and Bioethics
This edited volume stems from the Petrie-Flom Center’s 2016 annual conference, which brought together leading experts to identify the various ways in which law and ethics intersect with the…
Germ-Line Gene Editing and Congressional Reaction in Context: Learning From Almost 50 Years of Congressional Reactions to Biomedical Breakthroughs
Abstract: On December 18, 2015, President Obama signed into law a policy rider forestalling the therapeutic modification of the human germ line. The rider, motivated by the science’s potential unethical…
Health Law Workshop: Vardit Ravitsky
Presentation Topic: "The Shifting Landscape of Prenatal Testing: Between Reproductive Autonomy and Public Health" This paper is not available for download. To request a copy in preparation for the workshop,…
Book Launch: Specimen Science: Ethics and Policy Implications
In September 2017, MIT Press will publish Specimen Science: Ethics and Policy Implications, co-edited by Holly Fernandez Lynch (outgoing Petrie-Flom Executive Director), Barbara Bierer, I. Glenn Cohen (Faculty Director), and Suzanne…
Call for Submissions: Special Issue “Genetic Discrimination and the Law”, Laws
Description Genetic science and technology are advancing at a fast pace, with scientists continuing to make genetic discoveries with respect to the make-up of the human body, and the cause…
HLS in the World: New Technologies, New Dilemmas: Part of the HLS200 Bicentennial Celebration
This event was part of the HLS in the World sessions of HLS │200, a bicentennial summit of academic sessions and programs devoted to legal issues of pressing importance. Panel Description …
Research with Biospecimens: Balancing Individual Interests and Social Goods
This panel at the annual meeting of the American Society for Bioethics and Humanities examined issues addressed at Petrie-Flom's 2015 conference "Specimen Science: Ethics and Policy Implications," and the edited…
Health Law Workshop: I. Glenn Cohen
Presentation Topic: "Cops, Docs, and Code: A Dialogue Between Big Data in Health Care and Predictive Policing" This paper is not available for download. To request a copy in preparation…
Fourth Annual Harvard-UCLA Food Law and Policy Conference: Food Innovation and the Law: Navigating the Next Frontier
The Food Law Lab at Harvard Law School and the Resnick Program for Food Law & Policy at UCLA School of Law hosted the 4th Annual Harvard-UCLA Food Law and…
How Gene Cloning In Pigs Could Help Humans Fight Disease
For the next great medical advancement, look not to the test tube, but to the farm. Experiments that were done here in Boston could make it possible to one-day transplant…
Post-Doctoral Research Position, Stanford Center for Biomedical Ethics (SCBE)
This position is available as part of the Stanford Training Program in Ethical, Legal, and Social Implications (ELSI) Research and at the Center for Integration of Research on Genetics and…
Call for Papers: Data-driven Health Care Conference, Ewha Institute for Biomedical Law & Ethics, South Korea
1. Conference Description The Ewha Institute for Biomedical Law & Ethics (EIBLE) is seeking submissions for its annual conference to be held on September 23, 2017 in Seoul. This year’s…