Privacy - Bill of Health

“Actionability” and the Ethics of Communicating Results to Study Participants

February 3, 2021February 18, 2021 The Petrie-Flom Center Staff Leave a comment

By Patrick Monette

To what end does a physician have a responsibility toward a research participant? Specifically, what data may be considered “actionable” for the physician to disclose to the patient, and when and how might this be done?

In the clinical setting, contemporary medical ethics address a physician’s “fiduciary responsibility.” That is, there is a well-established professional expectation that the physician will place the patient’s interests above their own and advocate for their welfare. This post focuses on an alternative dyad, that of physician and research participant, to explore how the field has broached the topic of actionability in the setting of clinical research. Read More

How to Secure Our Digital Health Infrastructure Against Cyber Attacks

January 29, 2021January 28, 2021 Vrushab Gowda Leave a comment

By Vrushab Gowda

Our health information infrastructure is highly susceptible to cyber attacks. At the time of writing, the Department of Health and Human Services (HHS) is actively investigating over 700 major breaches over the past 24 months alone.

It is incumbent upon our institutions to proactively guard against these threats, with our federal government leading the charge.

Medicine doctor and stethoscope in hand touching icon medical network connection with modern virtual screen interface, medical technology network concept

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

January 27, 2021February 18, 2021 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?

Society or population, social diversity. Flat cartoon vector illustration.

Bias, Fairness, and Deep Phenotyping

January 27, 2021February 18, 2021 The Petrie-Flom Center Staff Leave a comment

By Nicole Martinez

Deep phenotyping research has the potential to improve understandings of social and structural factors that contribute to psychiatric illness, allowing for more effective approaches to address inequities that impact mental health.

But, in order to build upon the promise of deep phenotyping and minimize the potential for bias and discrimination, it will be important to incorporate the perspectives of diverse communities and stakeholders in the development and implementation of research projects.

Syringe being filled from a vial. Vaccine concept illustration.

Is Israel Trading Medical Information for Vaccines? Ethical and Legal Considerations

January 25, 2021January 25, 2021 Shelly Simana Leave a comment

By Shelly Simana

On January 7, Israeli Prime Minister Benjamin Netanyahu announced that millions of vaccines are expected to arrive in Israel, and that by March, anyone who wishes to get vaccinated will be able to do so.

He concluded his speech with a controversial statement: “as part of the agreement [with Pfizer], we stipulated that Israel will serve as a global model state for a rapid vaccine rollout of an entire country… Israel will share with Pfizer, with all of humanity, the statistics that will help in developing strategies to defeat the coronavirus” (my translation, from Hebrew).

But which statistics, what kind of data, will be shared with Pfizer? This question remains a mystery.

The False Dilemmas of the Fifth Circuit’s HIPAA Ruling

January 22, 2021January 21, 2021 Leslie Francis Leave a comment

By Leslie Francis

In a caustic opinion issued on January 14, the Fifth Circuit vacated penalties assessed by the U.S. Department of Health and Human Services (HHS) against the University of Texas M.D. Anderson Cancer Center for HIPAA security breaches.

As has happened to many other health care entities, M.D. Anderson had employees who were not careful with their laptops and thumb drives (and the data therein). A laptop with the unencrypted protected health care information of nearly 30,000 patients was stolen. Unencrypted thumb drives with information on another almost 6,000 patients were lost. M.D. Anderson disclosed the security breaches to HHS, which assessed civil monetary penalties for violation of HIPAA’s encryption and disclosure rules. M.D. Anderson then filed a petition for review, which resulted in the Fifth Circuit holding that the agency action was arbitrary and capricious for failure to consider an important aspect of the problem.

Commentators have already pointed out that this decision will reverberate throughout the HIPAA enforcement world. As it does, I hope it is met with scorn, for it trades on the informal logical fallacy of the false dilemma in two noteworthy ways.

Picture of doctor neck down using an ipad with digital health graphics superimposed

Symposium Introduction: Ethical, Legal, and Social Implications of Deep Phenotyping

January 20, 2021January 19, 2021 Francis X. Shen Leave a comment

This post is the introduction to our Ethical, Legal, and Social Implications of Deep Phenotyping symposium. All contributions to the symposium will be available here.

By Francis X. Shen

This digital symposium explores the ethical, legal, and social implications of advances in deep phenotyping in psychiatry research.

Deep phenotyping in psychiatric research and practice is a term used to describe the collection and analysis of multiple streams of behavioral and biological data, some of this data collected around the clock, to identify and intervene in critical health events.

By combining 24/7 data — on location, movement, email and text communications, and social media — with brain scans, genetics/genomics, neuropsychological batteries, and clinical interviews, researchers will have an unprecedented amount of objective, individual-level data. Analyzing this data with ever-evolving artificial intelligence (AI) offers the possibility of intervening early with precision and could even prevent the most critical sentinel events.

Cartoon of contact tracing for COVID-19.

The Constitutionality of Technology-Assisted Contact Tracing

December 29, 2020July 15, 2022 The Petrie-Flom Center Staff Leave a comment

By Dessie Otachliska

The COVID-19 pandemic has posed an impossible set of choices for governments, forcing them to weigh the competing interests of protecting public health, ending social isolation, and safeguarding privacy and civil rights. Each of these ends offer distinct societal benefits, but without a vaccine or effective COVID treatment, governments can only accomplish two of the three at one time. South Korea provides an interesting example of the tradeoffs countries have made in pursuit of these competing objectives. The country is widely regarded as a model for successfully managing the pandemic, averaging approximately 77 new cases a day since April—roughly the equivalent of 480 cases a day in U.S. population terms. South Korea’s story is especially impressive given that, in March, the country was considered one of the biggest infection hot spots outside of China. Comparing these statistics with the actual infection rate in the U.S. illustrates the success of the South Korean approach: on November 23, 2020, the CDC reported 147,840 new cases, for a total of 12,175,921 known infections in the U.S. since the pandemic began.

Rise in Hospital Ransomware Attacks Requires Government Intervention

November 10, 2020November 9, 2020 Jenna Becker Leave a comment

By Jenna Becker

Last week, widespread ransomware attacks against hospital systems forced several hospitals to go offline.

Despite the growing risk of cyberattacks against hospitals, the health care industry has been left to address this issue on their own. Ransomware attacks, named for the fee that these malicious viruses attempt to extract, can be very challenging to address, involving complex cybersecurity protocols.

Unfortunately, many hospitals lack the resources and the time required to prevent this malware from spreading. The government has provided minimal resources to hospital systems looking to enhance their cybersecurity. Resource-strapped hospitals require significant government support to address the growing threat of ransomware.

AI’s Legitimate Interest: Video Preview with Charlotte Tschider

November 9, 2020November 9, 2020 The Petrie-Flom Center Staff Leave a comment

The Health Law Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts.

The workshop is led by Professor I. Glenn Cohen, and presenters come from a wide range of disciplines and departments.

In this video, Charlotte Tschider gives a preview of her paper, “AI’s Legitimate Interest: Towards a Public Benefit Privacy Model,” which she will present at the Health Law Policy workshop on November 9, 2020. Watch the full video below:

Category: Privacy