Illustration of a man and a woman standing in front of a DNA helix

The End of Privacy?

By Rachele Hendricks-Sturrup

“Any idea we had about privacy is over,” says Dr. Julia Creet, leading international scholar in Cultural Memory Studies, Professor of English at York University, and author of the upcoming book, The Genealogical Sublime. In 2017, Dr. Creet received a York Research Leader Award in part for her investigative work and documentary entitled, “Data Mining the Deceased: Ancestry and the Business of Family,” which received critical acclaim and is streaming on demand in the U.S., Canada, and abroad. Dr. Creet also received a York President’s Research Impact Award in 2019 for her research on digital privacy, data mining, genealogy, and memory.

Dr. Creet’s work builds on Bill of Health’s key ethical and legal discussions around the direct-to-consumer (DTC) genetic testing and health data privacy. Dr. Rachele Hendricks-Sturrup, genetics and privacy scholar and research fellow at Harvard Pilgrim Health Care Institute and health policy counsel at the Future of Privacy Forum, recently sat down with Dr. Creet to discuss emerging issues and concerns about genetic privacy (or a perceived lack thereof) in an increasing information and genealogical age. The following interview has been edited for length and clarity.

 

Dr. Rachele Hendricks-Sturrup: Regarding genealogical recording in the era on increasing DTC genetic testing, you’ve mentioned in your upcoming book, “Any idea we had about privacy is over.” Tell us a little more about your thoughts here. Read More

People taking part in the "Lights4Liberty" protests against President Trump's planned ICE raids against immigrants and the detention centers along the southern border. The protestor is carrying a sign that reads, "Child detention camps destroy children."

Memory, Trauma, and Asylum Law: A Role for Neuroscience?

This post is part of our Eighth Annual Health Law Year in P/Review symposium. You can read all of the posts in the series here. Learn more about the event and stay tuned for video of each session on the Petrie-Flom Center’s website.

By Francis X. Shen and Aldis H. Petriceks

Today hundreds of thousands of asylum seekers await their hearings. Multiple studies conducted in 2019 confirmed that the conditions of detainment are often deplorable. The federal government recently acknowledged a lack of adequate medical and mental health care at the Southern Border, and the U.S. Civil Rights Commission issued a 200-page report documenting the Human Cost of Inhumane Immigration Policies, highlighting the severe damage to child and adult mental health at the border. All the while, despite public outrage and government claims to the contrary, family separation has remained prevalent. Read More

Black and white photo of a line of dominoes toppling over

The (Possible) “Dark Side” of Gene Editing Technologies

By Shelly Simana

Gene editing technologies enable people to directly change their DNA sequence by adding, removing, or replacing DNA bases. Today, for the first time, as Jennifer Doudna and Samuel Sternberg announced in their book, A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, people “possess the ability to edit not only the DNA of every living human but also the DNA of future generations” (p. xvi). The emergence of new gene editing tools, such as CRISPR-Cas9prime editing, and dubbed SATI, has led to momentous advances in biotechnology as the new tools make gene editing faster, easier, less expensive, and more precise than ever before.

While gene editing technologies offer great promise, they may also introduce risks with far-reaching consequences. This post focuses on the possible “dark side” of gene editing technologies and addresses some threats that the technologies might pose to human lives. While nowadays some of those risks would be deemed “science fiction,” they should be in the back of our minds as we ponder the potential impact of gene editing technologies.

Gene Editing as a Weapon of Mass Destruction Read More

Three hard hats for construction work lined up on a concrete wall

Enhancing Patient Safety Education and Training through Legal Study

By John Tingle

In the new NHS Patient Safety Strategy for England there is a discussion of patient safety education and training. While safety is now better understood there are significant numbers of people who still have a limited understanding of safety science.

A National Patient Safety Syllabus

A commitment is made to have a universal patient safety syllabus and training program for the whole of the NHS. Health Education England (HEE) will have a pivotal role: Read More

Ambassador-at-Large Deborah Birx giving a speech from a podium with an American flag and PEPFAR banner in the background

One of the Biggest Public Health Initiatives in History: PEPFAR and HIV

By Daniel Aaron

In October, the Petrie-Flom Center hosted a conference of world-leading experts in HIV/AIDS to discuss one of the biggest public health successes in history: PEPFAR, the President’s Emergency Plan for AIDS Relief. PEPFAR was launched in 2003 in response to a burgeoning global epidemic of HIV. The program offered $2 billion annually, rising to about $7 billion in 2019, to surveil, diagnose, treat, and reduce transmission of HIV around the world.

PEPFAR prevented what could have become an exponentially growing epidemic. It is estimated to have saved more than 17 million lives and avoided millions of new HIV infections. As a result, the speakers at the conference were quick to extol the virtues of the program. Professor Ashish Jha called it an “unmitigated success”; Professor Marc C. Elliott named it a “historic effort”; Dr. Ingrid Katz described PEPFAR as “nothing short of miraculous.”

However, several undercurrents within the conference, as well as more explicit points made by several panelists, suggested the importance of enlarging the discussion beyond PEPFAR itself to include other policies that impact HIV and AIDS, and even other diseases.

Read More

Illustration of a family and large clipboard with items in a list checked off. All are underneath a large blue umbrella

Universal Coverage Does Not Mean Single Payer

This post is part of our Eighth Annual Health Law Year in P/Review symposium. You can read all of the posts in the series here. Review the conference’s full agenda and register for the event on the Petrie-Flom Center’s website.

By Joseph Antos, American Enterprise Institute

Health spending in every major developed country is substantially below that of the U.S., and measured health outcomes appear to be better. Progressives have jumped to the conclusion that adopting single-payer health care would yield a simpler system in which everyone is covered, costs are reduced, and outcomes are improved. The truth is far more complicated.

Most other countries have a mix of public and private coverage. One size does not fit all, even in Europe. The government is the predominant purchaser of medical services in Canada and the U.K. In France and Australia, the government is the primary purchase but many people purchase private supplemental coverage. The government subsidizes individually-purchased insurance in Germany, the Netherlands, and Switzerland. Germany relies on employer coverage, akin to employer-sponsored coverage in the U.S. Read More

U.S. Patent and Trademark Office building

Laws and Facts of Patent Eligibility and Medical Diagnostics

This post is part of our Eighth Annual Health Law Year in P/Review symposium. You can read all of the posts in the series here. Review the conference’s full agenda and register for the event on the Petrie-Flom Center’s website.

By Jacob S. Sherkow

For this year’s Health Law Year in P/Review, I’ll be talking about § 101, that most enigmatic of laws from the patent statute. Like many other areas of intellectual property, patent law has a threshold subject matter inquiry embodied in statute—this is § 101—which reads, “Whoever invents or discovers any new and useful process, machine, manufacture, or composition of matter, or any new and useful improvement thereof, may obtain a patent therefor, subject to the conditions and requirements of this title.” But because any “competent draftsman” of patent applications could claim an invention as, say, “a process” rather merely an idea, courts have, almost since the statute’s first enactment in 1790, ignored the language of the text entirely. You should too. Instead, it has for almost all of its history, been interpreted in the following manner: “Anything under the sun made by man” is patentable subject matter, save “abstract ideas” or “natural laws, phenomena, or products.” Sure: defining what is a “natural” law is tough, but it’s not a phrase so devoid of application as to make it nonsense. (Unless you’re a complexity theorist.) Read More

The Week in Health Law podcast logo

New TWIHL with Erin Fuse Brown and Elizabeth McCuskey

Erin Fuse Brown and Elizabeth McCuskey have a fantastic new article coming out in the University of Pennsylvania Law Review entitled “Federalism, ERISA, and State Single-Payer Health Care” that is the subject of our conversation.

Erin Fuse Brown is a Professor of Law at Georgia State University’s College of law. She teaches Administrative Law; Health Law: Financing & Delivery; and the Health Care Transactional & Regulatory Practicum. She is a faculty member of the Center for Law, Health & Society. In 2019 Professor Fuse Brown was awarded a grant from the Laura and John Arnold Foundation to study out-of-network air ambulance bills. She served as co-investigator on a grant from the National Human Genome Research Institute from 2014-2017 to study legal protections for participants in genomic research and in 2017 won the Patricia T. Morgan Award for Outstanding Scholarship among her faculty. Elizabeth McCuskey is a Professor Law at UMass School of Law, There she teaches Civil Procedure, Health Law, Food & Drug Law, and Health Care Antitrust courses. Her research focuses on regulatory reforms for health equity and courts’ roles in securing those reforms. She is broadly published and her work on ERISA preemption and state health reform was featured on Health Affairs Blog and she has covered FDA preemption for SCOTUSBlog. She was a 2016 ASLME Health Law Scholar.

The Week in Health Law Podcast from Nicolas Terry is a commuting-length discussion about some of the more thorny issues in health law and policy. Subscribe at Apple Podcasts or Google Play, listen at Stitcher Radio, SpotifyTunein or Podbean.

Show notes and more are at TWIHL.com. If you have comments, an idea for a show or a topic to discuss you can find me on Twitter @nicolasterry or @WeekInHealthLaw.

A family of four, two parents and two children, walk down the beach together at sunset.

The (Ante-Mortem) Interest in Genetic Continuity

By Shelly Simana

Omri Shahar was killed in a car accident when he was 25 years old. At his death, Omri’s parents petitioned the Israeli family court for posthumous sperm retrieval. The request was approved yet, one year later, they submitted an additional request—to use the sperm to fertilize a donated egg, implant the embryo in a gestational carrier, and raise the child. The basis of their request was Omri’s interest in “genetic continuity.” This interest is about individuals’ desire to leave a “piece” of themselves in the world and maintain a chain of continuity. It is about perpetuating one’s genes to future generations as a liberal expression of personal identity and a communitarian expression of family heritage. Read More

A mother holds her baby close to her chest and gazes at their face

Maternity Scandal Hits the NHS

By John Tingle

Unfortunately, it’s never too long before a major NHS patient safety crisis hits the newspaper headlines in the United Kingdom. The Shrewsbury and Telford Hospital Trust (SATH) maternity scandal has just become a major breaking U.K. patient safety news story.

Shaun Lintern reports in The Independent:

Hundreds of families whose babies died or were seriously injured at the Shrewsbury and Telford Hospital Trust do not even know their cases have been identified for investigation in the biggest maternity scandal to ever hit the NHS… Dozens of babies and three mothers died in the trust’s maternity wards, where a ‘toxic culture’ stretched back to 1979, according to an interim report leaked to The Independent this week.

Patient Safety Scandals

Read More