Tag: data

Open Genomics and Privacy: New Case Law in South Africa Affirms a Key Principle

Donrich Thaldar Leave a comment

by Donrich Thaldar

As the era of genomic medicine dawns, large-scale genomics projects are becoming increasingly central to health care advancements. Projects like FinnGen in Finland, the UK Biobank, and the All of Us initiative in the United States are charting new frontiers in precision medicine, enabling researchers to unlock the genetic codes underlying a wide array of diseases. These initiatives collect genetic data from hundreds of thousands of individuals, providing an invaluable resource to identify disease markers and tailor medical treatments to individuals’ genetic makeup. Such projects are not only pushing the boundaries of medical knowledge but are also laying the foundation for a future where treatments are more effective and personalized.

However, in the Global South, large-scale genomics projects are far fewer. Qatar has taken strides with its own Qatar Genome Program, but examples are still limited across Africa and other regions, where genomics research is often constrained by funding, infrastructure, and representation issues. In Africa, where genetic diversity is high but research representation has historically been low, the need for such projects is critical. Without local genomics data, the benefits of precision medicine may largely bypass African populations, further exacerbating global health inequities.

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Operating room Doctor or Surgeon anatomy on Advanced robotic surgery machine.

Protecting Consumer Privacy in DTC Tissue Testing

Adithi Iyer Leave a comment

By Adithi Iyer

In my last piece, I discussed the hypothetical successor of 23andme — a tissue-based direct-to-consumer testing service I’ve called yourtissueandyou — and the promise and perils that it might bring in consumer health information and privacy. Now, as promised, a closer look at the “who” and “how” of protecting the consumer at the heart of direct-to-consumer precision medicine. While several potential consumer interests are at stake with these services, at top of mind is data privacy — especially when the data is medically relevant and incredibly difficult to truly de-anonymize.

As we’ve established, the data collected by a tissue-based service will be vaster and more varied than we’ve seen before, magnifying existing issues with traditional data privacy. Consumer protections for this type of information are, in a word, complicated. A singular “authority” for data privacy does not exist in the United States, instead being spread among individual state data privacy statutes and regulatory backstops (with overlapping sections of some federal statutes in the background). In the context of health, let alone highly sophisticated cell signaling and microenvironment data, the web gets even more tangled.

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sample tube in female hands with pipette.

Why We Should Care About the Move from Saliva to Living Cells in Precision Medicine

Adithi Iyer Leave a comment

By Adithi Iyer

The cultural, informational, and medical phenomenon that is 23andMe has placed a spotlight on precision medicine, which seeks to personalize medical care to each patient’s unique makeup. Thus far, advances in direct-to-consumer genetic testing have made saliva-sample sequencing services all the rage in this space, but regenerative medicine, which relies on cells and tissues, rather than saliva, now brings us to a new, increasingly complex inflection point.

While collecting and isolating DNA samples from saliva may offer a wealth of information regarding heredity, disease risk, and other outflows of the “instruction manual” for patients, analyzing cells captures the minutiae of patients that goes “beyond the book” and most closely informs pathology. Disease isn’t always “written in the stars” for patients. Epigenetic changes from environmental exposures, cell-to-cell signaling behaviors, and the mutations present in diseased cells all profoundly inform how cells behave in whether and how they code the instructions that DNA offers. These factors are critical to understanding how disease materializes, progresses, and ultimately responds to treatment. This information is highly personal to each patient, and reflects behavioral factors as well as genetics.

Regenerative medical technologies use cell- and tissue-based methods to recapitulate, bioengineer, and reprogram human tissue, making a whole suite of sci-fi-sounding technologies an ever-closer reality. With cell-based and other regenerative therapies entering the market (making up an entire FDA subgroup), it well worth considering how cell-based medicine can advance the world of personalized consumer testing. In other words, could a corporate, direct-to-consumer cell-based testing service be the next 23andMe? And what would that mean for patients?

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DNA helix on colored background.

State Genetic Privacy Statutes: Good Intentions, Unintended Consequences?

The Petrie-Flom Center Staff Leave a comment

By Christi Guerrini, David Gurney, Steve Kramer, CeCe Moore, Margaret Press, and Amy McGuire

State legislators have enacted a flurry of genetic privacy bills that will strengthen the privacy and security practices of direct-to-consumer genetic testing companies and give customers more control over their data. What they might not realize is that these bills could be interpreted in ways that limit law enforcement’s ability to use a new technique that helps identify violent criminals and human remains and exonerate the wrongfully convicted.

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Genetic engineering and digital technology concept.

The ‘Res Nullius’ Construction of Human Genomic Data

Donrich Thaldar Leave a comment

By Donrich Thaldar

No one domain of the law holds exclusive sway over human genomic data. Instead, genomic data have a multidimensional legal nature, meaning that multiple legal domains — including property law, privacy law, contract law, and intellectual property law — are all applicable. This opens the door for different persons to have rights originating in different legal domains with respect to the same genomic data.

To determine who has rights with respect to a particular person’s genomic data, the rules of each relevant legal domain must be applied. The application of these rules to genomic data may be relatively straightforward in some domains, but in property law — which is relevant in determining ownership of genomic data — it is often more complicated. Only a handful of jurisdictions have specifically legislated on the ownership of genomic data. In the absence of such specific legislation that provides who owns genomic data, general property law rules must be applied. (In common law legal systems, and some mixed legal systems where legislation is absent, this would entail resorting to the jurisdiction’s common law.) However, given the novelty of applying property law rules to genomic data, it is not always obvious which of the general rules would apply. In this post, I will share some of my research group’s thinking in this regard. Although our thinking is based in South African law, many of the principles are shared with other legal systems.

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Hand holding smartphone with colorful app icons concept.

The Fourth Amendment and the Post-Roe Future of Privacy

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By Katie Gu

An April 2021 data privacy bill sponsored by Senator Ron Wyden (D-OR) has taken on new urgency in the post-Roe Digital Age.

The bipartisan bill, The Fourth Amendment Is Not For Sale Act, would close the current legal loophole through which the FBI, Department of Homeland Security, Department of Defense, Customs and Border Protection, Immigration and Customs Enforcement, and the Internal Revenue Service, have repeatedly purchased Americans’ personal and consumer information from data brokers.

In the wake of the recent Dobbs v. Jackson Women’s Health Organization decision, this bill may play an important role in protecting reproductive health data against government overreach and new forms of surveillance technologies.

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Houses.

New Data on Eviction Laws Opens Doors for Evaluation

Temple University Center for Public Health Law Research Leave a comment

Even before the COVID-19 pandemic, there was an eviction crisis in the United States. Estimates suggest landlords across the country file 3.7 million eviction cases each year — leaving considerable impacts on health and well-being in their wake. 

The eviction process is regulated by a patchwork of state/territory and local laws and court rules that govern the judicial process, but little is known about the ways in which these laws affect the likelihood of evictions.  

A new database, launched by the Legal Services Corporation (LSC) in partnership with the Center for Public Health Law Research, captures the entire eviction legal process, from pre-filing to post-judgment, in different communities around the country.  

The data provide early insights, including: 

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Illustration of multicolored profiles. An overlay of strings of ones and zeroes is visible

We Need to Do More with Hospitals’ Data, But There Are Better Ways

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By Wendy Netter Epstein and Charlotte Tschider

This May, Google announced a new partnership with national hospital chain HCA Healthcare to consolidate HCA’s digital health data from electronic medical records and medical devices and store it in Google Cloud.

This move is the just the latest of a growing trend — in the first half of this year alone, there have been at least 38 partnerships announced between providers and big tech. Health systems are hoping to leverage the know-how of tech titans to unlock the potential of their treasure troves of data.

Health systems have faltered in achieving this on their own, facing, on the one hand, technical and practical challenges, and, on the other, political and ethical concerns.

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

A Proposal for Localized Review to Safeguard Genetic Database Privacy

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By Robert I. Field, Anthony W. Orlando, and Arnold J. Rosoff

Large genetic databases pose well-known privacy risks. Unauthorized disclosure of an individual’s data can lead to discrimination, public embarrassment, and unwanted revelation of family secrets. Data leaks are of increasing concern as technology for reidentifying anonymous genomes continues to advance.

Yet, with the exception of California and Virginia, state legislative attempts to protect data privacy, most recently in Florida, Oklahoma, and Wisconsin, have failed to garner widespread support. Political resistance is particularly stiff with respect to a private right of action. Therefore, we propose a federal regulatory approach, which we describe below.

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Cartoon of contact tracing for COVID-19.

A Critical Analysis of the Eurocentric Response to COVID-19: Data Colonialism

The Petrie-Flom Center Staff Leave a comment

By Hayley Evans

The international response to COVID-19 has paid insufficient attention to realities in the Global South, making the response Eurocentric in several ways.

This series of blog posts looks at three aspects of the COVID-19 response that underscore this Eurocentrism. The first post in this series will scrutinize the digital aspect of the international response to COVID-19. In creating and promoting technological solutions that are impractical and ineffective in the Global South, this digital focus has afforded asymmetric protection to those located in the Global North.

This series draws on primary research conducted remotely with diverse actors on the ground in Colombia, Nigeria, and the United Kingdom, as well as secondary research gathered through periodicals, webinars, an online course in contact tracing, and membership in the Ecological Rights Working Group of the Global Pandemic Network. I have written about previous findings from this work here.

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