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

People in a yoga class posing together

Are Wellness-Based Insurance Products Really a Win For Everyone?

By Anya Prince 

Insurers have long been in the business of selling a variety of life insurance products to their customers, but a new trend has them promoting wellness and encouraging customers to make healthy lifestyle choices through benefits programs. John Hancock’s Vitality program, for example, offers customers a free Fitbit, savings on annual life insurance premiums, and other discounts and perks for meeting fitness goals.

Other insurers are joining in this wellness game, offering their own versions of incentives and access to wearables in exchange for fitness goals. At first blush, these programs are a classic win-win situation similar to that behind workplace wellness programs. Customers/employees get free wearables. Win! Customers/employees (ideally) live longer due to healthy lifestyle choices. Win! Life insurers/employers have customers that pay premiums for more years before they die and a claim is paid out. Win!  Read More

ancestry dna kit box

Gamete Donor Anonymity is a Myth: Q&A With Seema Mohapatra

By some accounts, 26 million people have undergone direct-to-consumer (DTC) genetic or ancestry tests. While some of the results of these tests seem might seem obvious (I turned out to be half-Hungarian and half-Ashkenazi, to no one’s surprise), there have been a number of accounts in the media of test results that have been considerably more dramatic.

Some of the more shocking — and now shockingly common — scenarios are the ones in which a consumer finds out through a DTC test that they were donor-conceived, and that one or both of the parents who raised them are not their genetic relatives. Gamete donors, who often provide genetic material (eggs or sperm) with the promise of anonymity, are finding themselves the recipients of messages from genetic children they never intended to meet.

Gamete donors could argue that they have a right to privacy. But Prof. Seema Mohapatra suggests the idea of gamete donor privacy is no longer realistic, due to the state of genetic technology.

I sat down with Prof. Mohapatra to learn more about the many ethical and legal questions DTC genetic testing raises for donors, recipients, and clinics.

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

I. Glenn Cohen at the podium

WATCH: I. Glenn Cohen on ‘The Second Reproductive Revolution’

Dean John F. Manning honored Prof. I. Glenn Cohen, faculty director of the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, on the occasion of his appointment as the James A. Attwood and Leslie Williams professor of law.

Cohen, who is one of the world’s leading experts on the intersection of bioethics and the law, delivered a talk titled “The Second Reproductive Revolution,” focusing on how technology is changing reproduction from gene editing, to uterus transplants, to embryos derived from our skin. Read More

Dna test infographic. Genome sequence map, chromosome architecture and genetic sequencing chart abstract data. Molecule structure genetic test.

Ethnic Identity and Genomics Research: Toward Creating Culturally Sensitive Policies and Practices

By Erin Turbitt and Megan C Roberts

Genomic discoveries are rapidly entering healthcare, further propelled by large nationally funded initiatives such as the “All of Us” program. However, minority groups risk not benefiting from these discoveries to the same degree as individuals of European descent. This is because most genomics research involves European descended individuals and genomic databases largely consist of data from these studies. Read More

Call for Proposals: Addressing the Health Care Needs of Justice-Involved Populations

The Beazley Institute for Health Law and Policy at Loyola University Chicago School of Law and Annals of Health Law & Life Sciences invite original submissions for presentations at our Thirteenth Annual Health Law Symposium: Addressing the Health Care Needs of Justice-Involved Populations. The Symposium will take place at Loyola University Chicago School of Law on Friday, November 15, 2019 beginning at 9:00am.

The Symposium will explore legal barriers that justice-involved populations face in accessing health care, and address how those barriers can be alleviated. “Justice-involved populations” generally refers to individuals who are incarcerated in prisons, jails, immigrant detention centers, juvenile detention centers, on probation, or individuals who are otherwise involved with the U.S. justice system. Read More

What Should Happen to our Medical Records When We Die?

By Jon Cornwall

In the next 200 years, at least 20 billion people will die. A good proportion of these people are going to have electronic medical records, and that begs the question: what are we going to do with all this posthumous medical data? Despite the seemingly logical and inevitable application of medical data from deceased persons for research and healthcare both now and in the future, the issue of how best to manage posthumous medical records is currently unclear.

Presently, large medical data sets do exist and have their own uses, though largely these are data sets containing ‘anonymous’ data. In the future, if medicine is to deliver on the promise of truly ‘personalized’ medicine, then electronic medical records will potentially have increasing value and relevance for our generations of descendants. This will, however, entail the public having to consider how much privacy and anonymity they are willing to part with in regard to information arising from their medical records. After all, enabling our medical records with the power to influence personalized medicine for our descendants cannot happen without knowing who we, or our descendants, actually are.  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