Uncertainty and Immutability: Arguments for Genetic Nondiscrimination

By Kaitlyn Dowling, based on research by the Cyberlaw Clinic at the Berkman Klein Center for Internet & Society

Illustration of a gavel made out of a DNA helixIn a year-long series on Bill of Health, we’ll be exploring the legal scholarship on genetic non- discrimination. We’ll talk more about GINA and state laws protecting citizens from genetic discrimination. We hope these posts help shed light on this complex and ever-more-relevant area for legal scholars, policymakers, and the public at large. Read the previous posts in the series.

We’ve covered the history of genetic non-discrimination legislation and the potential risks of being discriminated against in housing and lending and education based on genetic data. Those risks are clear: there are many reasons why a bank, landlord, or school might want to take a person’s genetic information (and, thus, their potential future health) into account. Let’s take a deeper dive into two broad arguments in favor of strong privacy protections for genetic information and their consequences.

 

Uncertainty

A common policy argument in favor of genetic non-discrimination legislation is that genetic discrimination is unjust because the outcomes implicated by one’s genes may never manifest. In 2001, President George W. Bush stated that “[g]enetic discrimination is unfair to workers and their families. It is unjustified – among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean the condition will develop.” Read More

U.S.-Mexico border wall in Texas near a dirt road

Targeting Health: How Anti-Immigrant Policies Threaten Our Health & Our Humanity

By Patricia Illingworth and Wendy E. Parmet

On May 19th of last year, Carlos Gregorio Hernandez Vasquez died of the flu while being held in a cell by U.S. Customs and Border Protection (CBP) in south Texas. He was just 16, a migrant from Guatemala. Hours before his death, when his fever spiked to 103, a nurse suggested that he be checked again in a few hours and taken to the emergency room if he got any worse. Instead, Carlos was moved to a cell and isolated. By morning, he was dead.

Sadly, Carlos’s substandard medical treatment was not an isolated case. Between December 2018 and May 20, 2019, five migrant children died while in federal custody. All of them were from Guatemala. Their deaths were not accidental. Rather, they died as a consequence of harsh policies that are designed to deter immigration, in part, by making life itself precarious for migrants.

Since taking office, the Trump administration has instituted a wide-ranging crackdown on immigration. A surprising number of the policies the administration has instituted as part of that crackdown relate directly or indirectly to health. For example, in addition to providing inadequate treatment to sick migrants, CBP has refused to provide flu shots to detainees, despite the fact that influenza, like other infectious diseases, can spread rapidly in overcrowded detention facilities. In dismissing a CDC recommendation to provide the vaccines, CBP cited the complexity of administering vaccines and the fact that most migrants spend less than 72 hours in its custody before being transferred to other agencies, or returned to Mexico. These explanations lack credibility given how easy it is to administer flu vaccines. 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

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.

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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

Pile of colorful pills in blister packs

Promises and Perils of Prescription Drug Monitoring Programs: Workshop Report

This piece was part of a symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. The symposium was originally posted through the Northeastern University Law Review Online Forum.

Promises and Perils of Emerging Health Innovations Blog Symposium

We are pleased to present this symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. As a note, additional detailed analyses of issues discussed during the conference will be published in the upcoming Winter Issue of the Northeastern University Law Review.

Throughout the two-day conference, speakers and attendees discussed how innovations, including artificial intelligence, robotics, mobile technology, gene therapies, pharmaceuticals, big data analytics, tele- and virtual health care delivery, and new models of delivery, such as accountable care organizations (ACOs), retail clinics, and medical-legal partnerships (MLPs), have entered and changed the healthcare market. More dramatic innovations and market disruptions are likely in the years to come. These new technologies and market disruptions offer immense promise to advance health care quality and efficiency, as well as improve provider and patient engagement. Success will depend, however, on careful consideration of potential perils and well-planned interventions to ensure new methods ultimately further, rather than diminish, the health of patients, especially those who are the most vulnerable.

In the final post of the Promises and Perils of Emerging Health Innovations blog symposium, Leo Beletsky and the team from Health in Justice Action Lab provide a summary of an event held in conjunction with the Center for Health Policy and Law’s 2019 annual health law conference. The Promises and Perils of Prescription Drug Monitoring Programs (PDMPs) workshop was held on April 13, 2019 and convened experts, practitioners, experts, and other stakeholders to brainstorm strategies with the goal to “maximize the benefits of PDMPs, while minimizing harms.” Visit the Health in Justice Action Lab website (linked below) for information on this and other projects underway. 

Promises and Perils of Prescription Drug Monitoring Programs: Workshop Report

By Health in Justice Action Lab

Read More

DNA sequence

How the Internet and The Mapping of the Human Genome Disrupted the Teaching of Health Law: Does The 21st Century Really Change Everything?

This piece was part of a symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. The symposium was originally posted through the Northeastern University Law Review Online Forum.

Promises and Perils of Emerging Health Innovations Blog Symposium

We are pleased to present this symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. As a note, additional detailed analyses of issues discussed during the conference will be published in the forthcoming issue of the Northeastern University Law Review.

Throughout the two-day conference, speakers and attendees discussed how innovations, including artificial intelligence, robotics, mobile technology, gene therapies, pharmaceuticals, big data analytics, tele- and virtual health care delivery, and new models of delivery, such as accountable care organizations (ACOs), retail clinics, and medical-legal partnerships (MLPs), have entered and changed the healthcare market. More dramatic innovations and market disruptions are likely in the years to come. These new technologies and market disruptions offer immense promise to advance health care quality and efficiency, as well as improve provider and patient engagement. Success will depend, however, on careful consideration of potential perils and well-planned interventions to ensure new methods ultimately further, rather than diminish, the health of patients, especially those who are the most vulnerable.

In her post for the Promises and Perils of Emerging Health Innovations blog symposium, Jennifer S. Bard addresses many of the negative impacts of new health technologies, particularly as they apply to patient privacy. Bard points to special concerns in how we use health information related to DNA, mental health, and chronic illness. Throughout her piece, Bard also highlights the fact that law has not caught up to changes in technology and privacy issues, which causes more concern about how society and the healthcare system use these innovations.

How the Internet and The Mapping of the Human Genome Disrupted the Teaching of Health Law: Does The 21st Century Really Change Everything?

By Jennifer S. Bard

Read More

Illustration of a person running away carrying "stolen" 1's and 0's

Measuring Health Privacy – Part II

This piece was part of a symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. The symposium was originally posted through the Northeastern University Law Review Online Forum.

Promises and Perils of Emerging Health Innovations Blog Symposium

We are pleased to present this symposium featuring commentary from participants in the Center for Health Policy and Law’s annual conference, Promises and Perils of Emerging Health Innovations, held on April 11-12, 2019 at Northeastern University School of Law. As a note, additional detailed analyses of issues discussed during the conference will be published in the 2021 Winter Issue of the Northeastern University Law Review.

Throughout the two-day conference, speakers and attendees discussed how innovations, including artificial intelligence, robotics, mobile technology, gene therapies, pharmaceuticals, big data analytics, tele- and virtual health care delivery, and new models of delivery, such as accountable care organizations (ACOs), retail clinics, and medical-legal partnerships (MLPs), have entered and changed the healthcare market. More dramatic innovations and market disruptions are likely in the years to come. These new technologies and market disruptions offer immense promise to advance health care quality and efficiency, as well as improve provider and patient engagement. Success will depend, however, on careful consideration of potential perils and well-planned interventions to ensure new methods ultimately further, rather than diminish, the health of patients, especially those who are the most vulnerable.

In this two-part post for the Promises and Perils of Emerging Health Innovations blog symposium Ignacio Cofone engages in a discussion centered on the importance of addressing patients’ concerns when introducing new health technologies. While privacy risks may not always be avoided altogether, Cofone posits that privacy risks (and their potential costs) should be weighed against any and all health benefits innovative technology and treatments may have. To do so, Cofone introduces the concept of using health economics and a Quality-Adjusted Life Year (QALY) framework as a way to evaluate the weight and significance of the costs and benefits related to health technologies that may raise patient privacy concerns.

Measuring Health Privacy – Part II

By Ignacio N. Cofone

Read More

Eighth Annual Health Law Year in P/Review: Looking Back & Reaching Ahead

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 Prof. I. Glenn Cohen and Kaitlyn Dowling

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics is excited to host the Eighth Annual Health Law Year in P/Review to be held at Harvard Law School December 6, 2019. This one-day conference is free and open to the public and will convene leading experts across health law policy, health sciences, technology, and ethics to discuss major developments in the field over the past year and invites them to contemplate what 2020 may hold. This year’s event will focus on developments in health information technology, the challenge of increasing health care coverage, immigration, the 2020 election, gene editing, and drug pricing, among other topic areas.

As we come to the end of another year in health law, the event will give us both a post-mortem on the biggest trends in 2019 and also some predictions on what’s to come in 2020.

Among the topics we will discuss: Read More