Cover of the book "Transparency in health and health care in the US"

Order Now: “Transparency in Health and Health Care in the United States”

Transparency is a concept that is becoming increasingly lauded as a solution to a host of problems in the American health care system. Transparency initiatives show great promise, including empowering patients and other stakeholders to make more efficient decisions, improve resource allocation, and better regulate the health care industry.

Nevertheless, transparency is not a cure-all for the problems facing the modern health care system. The authors of this volume present a nuanced view of transparency, exploring ways in which transparency has succeeded and ways in which transparency initiatives have room for improvement. Read More

image of a genetic screen

How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?

By Alicia Ely Yamin and Jonathan Chernoguz

To complement the Petrie-Flom Center’s annual conference this year, Consuming Genetics, the Global Health and Rights Project at Petrie-Flom (GHRP) convened a small meeting of feminists, students, and other activists. On May 16, Harvard University’s Global Health Education and Learning Incubator , which co-sponsors GHRP, hosted the forum in conjunction with Marcy Darnovsky and Katie Hasson of Center for Genetics and Society (CGS).

Focusing on “Gene Editing, Ethics, Rights and Health Equity Issues,” and in particular the irrevocability of germline gene editing, the meeting began with Marcy Darnovsky, Executive Director of CGS asking, “How might we begin the discussion from [the perspective of] human rights, feminism, equity, and social justice, rather than from the science and biotechnology?”

This question echoed some of those posed during the Consuming Genetics conference, for example, by Jonathan Kahn in interrogating the equivocation of social diversity and empirical diversity in genomic research.  Read More

Graphical image of a genetic screen merging with algorithmic code

Do You Own Your Genetic Test Results? What About Your Temperature?

By Jorge L. Contreras

The popular direct-to-consumer genetic testing site AncestryDNA claims that “You always maintain ownership of your data.” But is this true?  And, if so, what does it mean?

For more than a century, US law has held that data – objective information and facts – cannot be owned as property. Nevertheless, in recent years there have been increasing calls to recognize property interests in individual health information. Inspired by high profile data breaches and skullduggery by Facebook and others, as well as ever more frequent stories of academic research misconduct and pharmaceutical industry profiteering, many bioethicists and patient advocates, seeking to bolster personal privacy and autonomy, have argued that property rights should be recognized in health data. In addition, a new crop of would-be data intermediaries (e.g., Nebula Genomics, Genos, Invitae, LunaDNA and Hu.manity.org) has made further calls to propertize health data, presumably to profit from acting as the go-betweens in what has been estimated to be a $60-$100 billion global market in health data. Read More

Faculty Director I. Glenn Cohen Appointed James A. Attwood and Leslie Williams Professor of Law

Harvard Law School Dean John F. Manning honored Petrie-Flom Center Faculty Director I. Glenn Cohen  on the occasion of his appointment as the James A. Attwood and Leslie Williams Professor of Law at a lecture and reception yesterday evening.

Prof. Cohen presented his work, “The Second Reproductive Revolution: From Gene Editing, to Uterus Transplants, to Embryos Derived from Our Skin – How Technology Is Changing Reproduction,” which will be the subject of a forthcoming book.

Cohen, a popular professor at Harvard and a first generation college graduate, was the youngest professor on the faculty at Harvard Law School (tenured or untenured) both when he joined the faculty in 2008 (at age 29) and when he was tenured as a full professor in 2013 (at age 34).

Glenn’s current projects relate to health information technologies, mobile health, reproduction/reproductive technology, research ethics, rationing in law and medicine, health policy, FDA law and to medical tourism – the travel of patients who are residents of one country, the “home country,” to another country, the “destination country,” for medical treatment. His past work has included projects on end of life decision-making, FDA regulation and commodification. He is the founding editor of this blog.

The Bill of Health community wishes him a heartfelt congratulations!

Petrie-Flom Student Fellowship Now Accepting Applications

What do a MacArthur Genius award winner, several health law professors at top schools, executive directors of leading health law centers, an associate chief counsel of the FDA, and partners and associates at top health care law firms all have in common? The Petrie-Flom Center Student Fellowship!

The Petrie-Flom Center Student Fellowship is a competitive one-year program designed to support Harvard graduate students interested in pursuing independent scholarly projects related to health law policy, biotechnology, and bioethics. With intensive mentorship from Petrie-Flom Center affiliates, student fellows are expected to produce a piece of publishable scholarship by the end of the academic year, at which point they may choose to be awarded a modest stipend and/or academic credit. Student fellows also blog regularly at Bill of Health, the Center’s blog, where their work receives substantial public exposure. Student fellows will receive training for online scholarly publishing; participate in and organize Center events; and enroll in the Health Law, Policy, Bioethics, and Biotechnology Workshop, which provides the opportunity to interact with leading scholars in the field.

 

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Illustration of mitochondrial donation

Time to Revisit the Prohibition on So-Called “Three-Parent IVF”?

In an editorial appropriately titled, “This Editorial Is Not About Designer Babies,” the New York Times supported efforts by the Petrie-Flom Center and suggested it was time for Congress to consider lifting the effective ban on mitochondrial replacement therapies — sometimes colloquially but inaccurately referred to as “three-parent IVF.”

The piece referred to the Petrie-Flom Center’s upcoming public event and Roundtable, where experts will have a general conversation about the state of the law in the U.S. and elsewhere and to, as a group, discuss whether the prohibition against MRT might be lifted and, if so, how that might be accomplished.

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Harvard X logo

New HarvardX Course on the FDA and Prescription Drugs

Interested in learning more about pharmaceutical policy? Curious about the role of the FDA in ensure safe and effective drugs reach the market? Wondering why drug prices are so high in the US? Readers of my prior posts may enjoy learning more about these topics!

Check out a free HarvardX online course, “The FDA and Prescription Drugs: Current Controversies in Context,” put together by Petrie-Flom Center affiliates Dr. Aaron Kesselheim, Dr. Ameet Sarpatwari, Dr. Jonathan Darrow, and many others, that is now open for enrollment. (Disclosure: I did not play any role in the development or making of the course, but I am serving as a teaching assistant/discussion moderator for the course). Read More

World map where continents are in blue pixels

Global Health Justice and Governance: Challenges and Proposals

A panel discussion held this week at Harvard Law School with Professor Jennifer Prah Ruger about her new book, “Global Health Justice and Governance,” with Professor Michael Stein and Petrie-Flom Center Executive Director Carmel Shachar, provided a stimulating space for transdisciplinary discussion of critical justice imperatives in today’s world.

The challenges facing global health justice—from forced displacement, to climate change, to ever-changing technologies and evolving epidemiological profiles—are far too complex for one discipline to explain or resolve alone, which makes these kinds of discussions all the more essential. Read More

petri dish with DNA fingerprint

3 Things You Should Know About the Petrie-Flom Center’s 2019 Annual Conference

Breakthroughs in genetics have often raised complex ethical and legal questions, which loom ever larger as genetic testing is becoming more commonplace, affordable, and comprehensive, and genetic editing becomes poised to be a consumer technology. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing.

We are excited, therefore, to have many major thought leaders in this space discuss these issues at the Petrie-Flom Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies,” which will take place at Harvard Law School in May. Read More

Don’t miss today’s Health Law Workshop with S. Matthew Liao

October 1, 2018 5:00 PM
Hauser Hall, Room 104
Harvard Law School, 1575 Massachusetts Ave., Cambridge, MA

Presentation: “The Moral Status and Rights of Artificial Intelligence”

To request a copy of the paper in preparation for the workshop, please contact Jennifer Minnich at jminnich at law.harvard.edu.

S. Matthew Liao is Director of Center for Bioethics and Arthur Zitrin Professor of Bioethics at the NYU College of Global Public Health. He uses the tools of philosophy to study and examine the ramifications of novel biomedical innovations.

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