Tag: gdpr

When AI Turns Miscarriage into Murder: The Alarming Criminalization of Pregnancy in the Digital Age

The Petrie-Flom Center Staff Leave a comment

by Abeer Malik

Imagine: Overjoyed at your pregnancy, you eagerly track every milestone, logging daily habits and symptoms into a pregnancy app. Then tragedy strikes—a miscarriage. Amidst your grief, authorities knock at your door. They’ve been monitoring your digital data and now question your behavior during pregnancy, possibly building a case against you using your own information as evidence.

This dystopian scenario edges closer to reality as artificial intelligence (AI) becomes more embedded in reproductive health care. In a post-Dobbs world where strict fetal personhood laws are gaining traction, AI’s predictive insight into miscarriage or stillbirth are at risk of becoming tools of surveillance, casting suspicion on women who suffer natural pregnancy losses.

The criminalization of pregnancy outcomes is not new, but AI introduces a high-tech dimension to an already chilling trend. At stake is the privacy and the fundamental right of women to make decisions about their own bodies without fearing criminal prosecution. Alarmingly, the law is woefully unprepared for this technological intrusion.

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A European Cancer Survivors’ Right to be Forgotten?

Hannah van Kolfschooten Leave a comment

By Hannah van Kolfschooten and Mirko Faccioli

There are currently over 12 million cancer survivors in Europe. Due to improving cancer screening methods and medical treatment, this number is expected to grow every year. Former cancer patients often face multiple forms of discrimination throughout their lives. Many commercial companies make long-term cancer survivors “pay twice” – while having similar life expectancies as their peers, they are denied access to key services because of their former cancer status.

To combat this unfair practice, some European countries are establishing a “cancer survivors’ right to be forgotten,” also referred to as the “oncological right to be forgotten.” Italy’s parliament just passed a law to establish the right. Patients’ rights organizations and EU institutions are pushing for a “European cancer survivors’ right to be forgotten.” This post outlines the purpose of such a right and flags potential challenges in its adoption.

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Governing Health Data for Research, Development, and Innovation: The Missteps of the European Health Data Space Proposal

The Petrie-Flom Center Staff Leave a comment

By Enrique Santamaría

Together with the Data Governance Act (DGA) and the General Data Protection Regulation (GDPR), the proposal for a Regulation on the European Health Data Space (EHDS) will most likely form the new regulatory and governance framework for the use of health data in the European Union. Although well intentioned and thoroughly needed, there are aspects of the EHDS that require further debate, reconsiderations, and amendments. Clarity about what constitutes scientific research is particularly needed.

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Who Owns the Data Collected by Direct-to-Consumer Health Apps?

Sara Gerke Leave a comment

By Sara Gerke and Chloe Reichel

Who owns the data that are collected via direct-to-consumer (DTC) health apps? Who should own that data?

We asked our respondents to answer these questions in the third installment of our In Focus Series on Direct-to-Consumer Health Apps. Learn about the respondents and their views on data privacy concerns in the first installment of this series, and read their thoughts on consumer access to DTC health app data in the second installment.

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Perspectives on Data Privacy for Direct-to-Consumer Health Apps

Sara Gerke Leave a comment

By Sara Gerke and Chloe Reichel

Direct-to-consumer (DTC) health apps, such as apps that manage our diet, fitness, and sleep, are becoming ubiquitous in our digital world.

These apps provide a window into some of the key issues in the world of digital health — including data privacy, data access, data ownership, bias, and the regulation of health technology.

To better understand these issues, and ways forward, we contacted key stakeholders representing a range of perspectives in the field of digital health for their brief answers to five questions about DTC health apps.

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Beyond HIPAA: A Proposed Self-Policing Framework for Digital Health Products

Vrushab Gowda Leave a comment

By Vrushab Gowda

As digital health products proliferate, app developers, hardware manufacturers, and other entities that fall outside Health Insurance Portability and Accountability Act (HIPAA) regulation are collecting vast amounts of biometric information. This burgeoning market has spurred patient privacy and data stewardship concerns.

To this end, two policy nonprofits – the Center for Democracy and Technology (CDT) and the eHealth Initiative (eHI) – earlier this month jointly published a document detailing self-regulatory guidelines for industry. The following piece traces the development of the “Proposed Consumer Privacy Framework for Health Data,” provides an overview of its provisions, and offers critical analysis.

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Data Talking to Machines: The Intersection of Deep Phenotyping and Artificial Intelligence

Carmel Shachar Leave a comment

By Carmel Shachar

As digital phenotyping technology is developed and deployed, clinical teams will need to carefully consider when it is appropriate to leverage artificial intelligence or machine learning, versus when a more human touch is needed.

Digital phenotyping seeks to utilize the rivers of data we generate to better diagnose and treat medical conditions, especially mental health ones, such as bipolar disorder and schizophrenia. The amount of data potentially available, however, is at once both digital phenotyping’s greatest strength and a significant challenge.

For example, the average smartphone user spends 2.25 hours a day using the 60-90 apps that he or she has installed on their phone. Setting aside all other data streams, such as medical scans, how should clinicians sort through the data generated by smartphone use to arrive at something meaningful? When dealing with this quantity of data generated by each patient or research subject, how does the care team ensure that they do not miss important predictors of health?

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